8 things I wish I had known when I was first diagnosed with Fibromyalgia

It’s been two years since I was diagnosed with fibromyalgia. It took me around two years to reach that point, which means it’s been four years in total that I have lived with this condition. I know many people view their illness as a blessing and turn it around into a positive. I don’t. I’m not one of those people.

I wish I didn’t have fibromyalgia

Don’t get me wrong, I’ve learned so much and I’ve grown a lot as a person because of everything that has happened to me. I’m postive, I’m happy and I get on with things as best I can. But the truth is, fibromyalgia is a horrible condition and I wish I didn’t have it. I don’t believe there is anyone who would feel differently.

Having said that, you don’t have a choice in the cards you are dealt and I have had to learn to adapt to a new way of life. Over the years, I have learned a lot about how to live as well as possible with fibromyalgia.

I make the most of a bad situation

The way I see it is you have two choices: wallow in your misery or do absolutely everything you possibly can to live life as well as you can despite the challenges of chronic illness. I dabbled a little in the former but I’m most definitely the type of person who is the latter. I guess you can say I am tenacious; I don’t give up easily.

It has taken a lot of experimentation and trying different things for me to realise what works for me and what doesn’t. Of course this all takes time and it’s a learning process that is ongoing– I still feel there is a part of my fibromyalgia puzzle that’s just not quite fitting right yet.

However, there are a few things that took me a while to figure out that I wish I had known right from the start. I thought it would be useful to share these in the hope that these may be helpful to someone who is in that place.

Please add your thoughts in the comments too. Let’s make this post a great resource for the newly diagnosed and for those who feel like they have lost their way a bit in treating their fibromyalgia.

1. Diet changes really do help, you just need to experiment and stick with it

Diet is always something that people are reluctant to change. I know I was! I think there was some resistance with me because I love food and I did not want to change anything else because of fibromyalgia– it had already robbed me of so much.

There was also some resistance because of the fact that there are uneducated people out there who tout it as a cure. “Change your diet and you will be right as rain.” Well I’m sure you know that’s not the case.

But here’s the kicker– food can cause you to be in pain. Changing your diet can help you to feel so much better. Everyone is different and what works for one will probably need tweaking for another. And it’s not an overnight thing either.

It’s a case of trial and error

I tried diet changes for a month at one point and they didn’t work. Admittedly, this was mainly because I wasn’t fully invested in it and I sneaked in a few things I shouldn’t have eaten throughout that month (what harm could that do, right?… Wrong!). It wasn’t until I gave it 100% and stuck with it for around 3 months that I realised the benefits.

I previously wrote about this topic at a time I felt really passionate about it and I was honestly astounded at the difference in my pain levels. I do think it’s something you need to approach with a healthy mindset and you shouldn’t feel like you can’t eat certain foods.

It’s not about dieting or restriction

It’s not about restriction. It’s more that you learn to appreciate which foods help to nourish and heal your body and which foods cause you pain. You naturally begin to make better choices because of that.

As your body gets stronger, the occasional treat can be fine but– if you are like me– you aren’t all that fussed about it because you feel the difference and no food is really worth the pain.

It boggles my mind to think that I was eating certain foods every day and I had no idea just how much they were making my condition worse. It wasn’t until I eliminated them from my system for a good while that I realised this. If I eat those foods now I feel bloated, zapped of energy and can feel my pain spike.

diagnosed_with_fibromyalgia_02

2. Stretching and gentle exercise will be one of the best things you can do for yourself

I can bend over now without being in a ton of pain. This is freaking awesome and I can’t even tell you how amazed I am at that. Rewind to January and I could hardly bend over at all; I struggled to even tie my own shoelaces when sitting down and doing so was sore.

Introducing stretching into my daily routine is one of the best things I have ever done for myself. It’s not elaborate and I don’t spend ages doing it but what a difference it has made for improving my pain and reducing stiffness.

I honestly wish I had done this years ago. The thing I like about it is you feel the difference immediately and you know you are doing yourself good.

Getting started is difficult but possible

You may feel reluctant to do any exercise or stretching because of your pain. Getting moving and exercising can be so difficult and painful in the beginning but it’s honestly key to helping you feel better in the long term. Step by step, slowly but surely you start to feel the benefits.

Going from bedbound to getting back on my feet was tough. Like really tough. But I knew I had to do it and I started with just moving around my house more and then gradually building up.

Fatigue still limits me and I’m not able to do anywhere near as much as I would like to. I can also still experience setbacks now that leave me in bed for a day or for a few days. But even so, I know that I need to get moving again to truly start to feel better– it’s a delicate balance between rest and movement for me.

The things to keep in mind are: never push yourself beyond what your intuition tells you is okay for you, keep it gentle and build up slowly. It will be tough in the beginning but it should never cause you to be in agony.

If that’s the case you are doing too much. Bear in mind that exercise encompasses everything you do in a day, it’s not just strictly what others would consider as exercise.

3. Don’t Push Through It

Oh, how I wish I had listened to this. I pushed and I pushed until my body completely and utterly crashed and now I am nowhere near as physically fit as I was and I don’t know if I will ever return to that point. Listen to your body.

I cannot emphasise how important that is. If it is screaming at you– i.e. you are constantly in excruciating pain, you have gone past the point of exhaustion and you feel like you are not coping– you are doing too much. It is

It is possible to live with minimal pain but it’s not easy. What it comes down to is making the right choices for you and sometimes that’s the complete opposite of what you really want to do. For me, I put my desire to work before my health and, to be blunt, I essentially broke my body because of that decision. Never again. Which leads me nicely onto…

4. Don’t put off making tough decisions– they are worth doing

For the year after I was diagnosed, I suppressed my intuition and did not listen. I made poor choices. I prioritised work and everything else literally fell apart around me– I was working and unable to do much more– and it reached the point where my body couldn’t keep going.

I wish I hadn’t buried my head in the sand. I wish that I had been brave enough to admit that I was struggling and I wish I had made the choice to slow down. Hindsight is a wonderful thing. At the time I just hoped that if I kept going, things would somehow get better.

The definition of insanity is doing something over and over again and expecting a different result.
– Albert Einstein

Life is tough and things don’t always pan out the way we want them to. We have fibromyalgia and we need to accept that fact will change things, no matter how much resistance we put up against it. You will no doubt be worried about what kind of life you will have if you have to give up working full time or if you have to stop doing certain things.

I think what’s worth bearing in mind is that a life in constant pain and misery is no life. The truth is, giving up certain things can actually be quite liberating because you no longer feel like life is such a struggle. Doing so also opens you up to new opportunities and possibilities that you may never have considered before.

It’s also worth keeping in mind that nothing is forever. Time out now to focus on your health could mean that you can return to something again in the future. Remember– without your health, you have nothing. Invest in it.
Being diagnosed with Fibromyalgia can be confusing. This is what I wish I had known when I was first diagnosed.

5. Drugs aren’t the only option and they will only help you to a certain extent

When I was first diagnosed I was under the impression that amitriptyline would sort out my sleep issues, which in turn would relieve me of my fibromyalgia symptoms. That didn’t turn out to be the case and I now see that was quite naive.

I’ve talked quite recently about the reasons behind why I don’t take any medications for fibromyalgia. It’s not that I have anything against pharmaceuticals, in fact, I recently asked my doctor about LDN (but let’s not go there…).

It’s more that I wish there were better options available and that patients were given more support than simply being given a prescription and left to it. I’ve had two pretty shitty experiences with drugs (amitriptyline and gabapentin) and it sucks that, when drugs don’t work for you, you are basically told there is nothing that can be done for you.

Even if they do work, it’s a case of being handed your prescription and off you go. Don’t accept that.

Medications can play an important role but they are only one part of managing fibro

I personally believe that pharmaceutical drugs only play a small role in managing fibromyalgia and that there are other options that people need to be made aware of. Drugs may play a role for some of you but if all you are doing is taking medication and nothing else, you will only get so far.

I wish I had figured this out sooner and had realised that there are also alternatives to traditional medications.

The best investment I have made is with the herbal therapies. These can often be taken alongside pharmaceuticals (though always consult your doctor first) and many people will start this way and then feel able to reduce their medications over time– that’s what I did.

Herbs are the safer alternative with fewer side effects and you can, of course, take them on their own like I now do too. I wish I had known about Vital Plan long before now! I would highly recommend reading the book “Suffered Long Enough” for more insight into this.

Click here to save $50 on the Restore Kit

6. You will probably only get so far with your GP but don’t let that stop you from moving forward

The sad truth is that you will probably be left feeling helpless by the traditional medical system. There will, of course, be the exception, but this is, unfortunately, the case for the majority. They are just not set up for managing chronic conditions like fibromyalgia.

We are stuck in a system with 10-minute appointments where there is just no way you can discuss all that is going on. I do have sympathy for doctors in that respect but I am also aware that many doctors just don’t have the right attitude or ability to deal with chronically ill patients. If that rings true for you, don’t give up!

Through being a stubborn, determined sod I would not accept the fact there was nothing else I could do. That’s something I’m so, so thankful of– I’d still be bed bound most of the time if I listened to my doctor.

Be your own health advocate. Do your research and realise that you know your body better than anyone else. Be guided by your intuition– it’s always right.

7. You need to take a multi-faceted approach to treating fibromyalgia

I think it’s important to realise that if you have fibromyalgia then your body is basically completely out of whack and it requires extra support to help it function. From my experience, it takes a range of different approaches to improve your life with fibromyalgia.

I said above that drugs only get you so far– the same can be said of everything. You will soon learn (if you haven’t already) that the people who had success in treating their fibromyalgia approach it from all angles.

Lifestyle changes can have a big impact

It has to be said that the biggest help comes from empowering yourself to feel better through your lifestyle choices.

I’ve already mentioned diet, exercise and herbal therapies– which are all important– but equally important are managing stress, slowing down, improving sleep and putting yourself and your health as your priority– don’t push yourself to put everyone before yourself, it only serves to stress and wears you out.

Keep in mind what I already said– that without health you don’t have much else. Taking the time to invest in your health now will put you in a better place to help others and hopefully do the things you want at a later date. I appreciate this is all far from being easy but I can’t stress its importance enough. But above all else…

8. Never Give Up!

Hold onto that hope of feeling better, embrace your stubborn side and don’t let anyone or anything stop you from moving forward. There will be many blocks that appear along the way and you are sure to feel disappointed, disheartened and frustrated as you figure things out.

But remember that you’ve got this. If you’ve read all of this post then I know that you believe things can get better for you. That is a massive step forward in itself. Keep going!

What would be on your list? Let me know in the comments down below.


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I've learned a few things after living with fibromyalgia for years. Here's what I wish I had known when I was first diagnosed. Click to read or pin to save for later.

71 Comments

  1. One thing I wish I had known from the beginning is sometimes good enough to get by is good enough. I’m a type A person and tend to procrastinate on things if I can’t get them “perfect”. I wish I allowed myself the grace to accept that some things are just going to be good enough. Like the laundry – not completely done, ever, but we always have clean clothes. Dinner – not an elaborate meal but even a quick veggie stir fry. Things like that.

    • Brilliant point Kim. I am very much a perfectionist too and it’s something I am slowly learning to let go of. At the end of the day, it doesn’t matter if everything is done exactly how we want and some things can wait 🙂

      • Thank you for sharing. I was diagnosed in the late 90’s with Fibromyalgia, but I have a lot of symptoms also related to Lyme
        You mentioned that you had issues with Amitriptyline and Gabapentin. Those two are part of the medications my doctor put me on. I’m interested in knowing what your issues were.
        I am in a lot of pain, as a result of doing too much physical exertion yesterday, and I took more than the habitual milligrams of Gabapentin. Today I added 600mgs of Motrin and rubbed my self with Deep Blue (essential oils rub). I appreciate you. Sincerely: Etti.

        • Hi Etti. Sorry to hear you’ve been living with fibro for such a long time. There is a huge overlap in symptoms between fibro and Lyme. I wish I had known this earlier as my Lyme went undiagnosed for years. Amitriptyline essentially turned me into a zombie– I couldn’t function on it and it did nothing for my pain. At the time, I was still able to work full-time so I felt I was better off without it. The gabapentin gave me side effects too. Off the top of my head, I believe it made me nauseous, a bit dizzy and I think it made my fatigue worse. And, I only got a slight reduction in pain so it wasn’t worth it for me. I am sorry you are experiencing payback from doing too much. It’s never easy to handle 🙁 Sending gentle hugs.

    • Linda
      I connect with all symptoms but Doctors not understanding. What do I do?

      • I’m sorry that you are not getting the help that you need. What are the doctors saying? One thing to keep in mind is that fibromyalgia is a diagnosis of exclusion so if your doctors are going down another path, that may be necessary to rule out other conditions. If you aren’t getting anywhere with your doctor, my advice would be to change doctor. You many need to see a few before you are taken seriously, sadly. In the mean time become your own health advocate, educate yourself as much as you can. There is a lot you can do for yourself. Even with a fibromyalgia diagnosis, there is little your doctor can offer you. Good luck!

  2. What a great blog! You have learned a lot in 2 years- more than I have learned in some ways with decades with ME/CFS and FM. I guess you’re a faster learner. Looking forward to checking out your herbal ideas.

    • Thank you. I think you can say I’m a bit of a geek and I’m not one to give up easily so I have researched a lot and tried a lot of different things along the way 🙂

  3. Carol Blackburn Reply

    Hi Donna, beautifully said in every way. I am another one who doesn’t really have any meds that I take on a consistent basis. I do have a couple I can take if I really need to but that’s only when my pain is extreme. Otherwise, keeping my system clean of drugs seems to work best. Also, I am allergic to so many things it’s difficult for a MD to prescribe something I can take. I too have learned that “good enough” is how it has to be. That wasn’t easy for me, being type A, the bread-winner of the house, etc. It’s different now, I take it day by day, sometimes minute by minute. If I sleep 12 hrs. one night I might sleep off and on every 3 hours another night and nap during the day. Whatever! I have done dietary things too and find that lots of vegetables, fish, turkey and chicken are what my body likes most. The one thing we all need to remember is to “laugh”; laugh at ourselves, the world, and little wonders that are all around us. Leave the drama to television; keep yourself in contact with positive people who bring joy into your life.
    I wish you a beautiful day.
    Carol

    • Thank you Carol. Oh absolutely, you are spot on. Learning to let go and realise things don’t need to be perfect or done right away has been an important lesson for me too. Laughter and having fun is so important. We have to find the joy in life for sure 🙂 We can make positive strides for ourselves.

  4. Hi everyone, I think we all have different levels of fibro pain. I wish so much that I could live a satisfying life by stretching and altering my diet, but my pain is so intense! Without my pain meds my entire body hurts so bad I cannot move. I refer to it as “suicidal pain”. My shoulders feel as though I’ve lifted weights way above my ability over and over. I cannot move my arms unless I hold my hand/arm with my other and move it into place. My lower back, thighs, hips, butt muscles hurt horribly. I cannot lift my legs to put my feet in my pant legs without crying out, I cannot lift my leg to step up a curb without severe pain. If I sit too long in one position, my body freezes onto that position. When I try to move, tears run down my face. I cannot sleep all night because I wake up hurting so bad. I have to move to my recliner to try to sleep. I could go on and on, but with my pain level, medication is my ONLY salvation. I take timed release morphine, oxycodone (for break through pain, cymbalta and xanax to help me sleep. This combo allows me to “function” without it I could not survive. I wish mine could be controlled as yours, but it can’t.

    • Cathy, I am so sorry you are in so much pain- I can really empathise with you and where you are at. I think it is worth keeping in mind that I don’t share everything on my blog and you don’t know what my pain used to be like. Only those close to me do. This is just a gentle reminder that comparison can be a dangerous thing. Don’t compare your start to someone else’s middle because doing so will get you into the mind frame that you are much worse and therefore can’t achieve the same things. Always hold onto hope.

      I wrote this post because I wish I had acted on these things sooner than I did. I put them off because I was in pain. It’s hard to get started on something when you are in pain, especially when doing things like stretching causes even more pain in the beginning. Even though it was very difficult, it turned out that these were the things that would help free me from pain. It’s not easy, you have to start small, it’s very hard and it takes a lot of motivation and determination. It hurt like hell to start with but I knew I was doing the right thing and all my hard work began to pay off.

      My comments on medication are not that they don’t have a use. But rather that the options available are not good enough. The % of people they actually work for is far too small. Plus I feel that they should be used in conjunction with things that will actually improve the underlying dysfunction in the body. Medication addresses symptoms, not causes. For pain medication to be successful, it should keep pain levels tolerable. For many it sadly does not and that’s not good enough in my opinion. People deserve better.

      • Thank you Donna. I will keep up on your bog and try the methods that have worked/helped you and others. I’m just having a hard time with the pain and losing so much of my former life due to not having my former strength or energy. It’s a hard realization that life changes so drastically and from my research, it doesn’t seem to be on the top of any research list on trying to figure out the cause/prevention/cure etc..
        Have a good day, Cathy

        • I get you Cathy. I have learned that one of the most important factors for feeling better is the unending ability to adapt to change. Sadly, it’s the hardest thing to do. I try to view giving up things as opening myself up to other opportunities. However, it is definitely a grieving process that you go through and I still have days where I can get upset about everything. It’s my hope and strong belief things will get better that ultimately pull me through, along with some amazing support from those closest to me. I hope what you find here is helpful to you and feel free to get in touch any time. Always happy to help where I can, even if it is just that you want to speak to someone who gets it.

    • Cathy……I know how you feel. The only thing that I have lean’t is to be kind to yourself. That means putting yourself first.
      Slow down and do what ever makes you happy.

    • Roxanne Burrows Reply

      Cathy, I was similar to you many years ago. I couldn’t stand, walk, lie, sit whatever without excruciating pain. I don’t have that level of pain now. I couldn’t tell you why. It took 16 years to get a diagnosis as my GP seemed not to want to share that information with me.
      But I digress. There is hope for that pain to subside and I hope it does for you soon. I agree with the label you give it. But you are clearly stronger than your pain.

    • Roxanne Burrows Reply

      Cathy, I was similar to you many years ago. I couldn’t stand, walk, lie, sit whatever without excruciating pain. I don’t have that level of pain now. I couldn’t tell you why. It took 16 years to get a diagnosis as my GP seemed not to want to share that information with me.
      But I digress. There is hope for that pain to subside and I hope it does for you soon. I agree with the label you give it. But you are clearly stronger than your pain.

    • Have you researched Ehlers Danlos Syndrome. It sounds like your joints may be partially or fully dislocating. It would be worth looking into. I hope you find some answers.

    • Hi Cathy! I totally get your situation! I was diagnosed by my Internist with Severe Fibromyalgia. My first 5 years were spent bedridden until my Dr & I figured out what worked for me. I too am on medications; OxyContin, Cymbalta, Skelaxin, & Norco for breakthrough pain. One thing that really helped me was going to PT. The therapist was familiar with FM & helped me to get strength back in my body. They took things slow & easy, always doing a light massage first & then very gentle exercises until they could build up my strength. I also use Salonpas patches for pain & use DoTERRA ‘s Deep Blue Lotion. The Deep Blue Lotion is a combination of essential oils & it works great for me! Also in the beginning having a Moist Heating Pad really helped! It draws the moisture from the air adds it to the heating pad and the relief sinks deep into your muscles. Those things might help you as well. I had been onOxycodone but it made me start feeling strange & more lethargic after I had been on it for a while so I got off of it. I’ve had my Fibro for 12 years now. Praying for you that you will start to get some relief from your pain & be able to move more without the excruciating pain. I used to thrash around on my bed in such severe pain that I just wanted God to take me home to heaven. I understand. Gentle hugs. 🌷💐🌷

  5. This was a great post and actually very helpful. My sister was recently diagnosed, but like yourself has been living with this pain for around 18 months. That’s quick for a diagnosis I hear. I think for someone just starting her journey with FM, your post is amazingly helpful. Thank you!

    • Hi Ben, thank you for your kind comments. I am glad you have found this post helpful and I wish your sister all the best.

  6. I have the Lupus-Fibro double whammy. I have to take drugs for the Lupus. I also get constantly retested “just in case”. What are they checking for that the Lupus markers will have magically vanished? So tired of being a doctor pincushion. I tried LDN for a few months, it made me violently ill and unable to eat (well more so than the norm) so when I go back to the Rhumi in 3 days, I get to tell him that and watch him blink at me. Savella seems to be helping but not with the fatigue. NOTHING seems to help with that. And they refuse to try to treat it. I have this http://fit450.com/HTML/XBX_chart1.html and I’m trying to do as much as I can but if I get down on the floor for anything, I’m not getting up. (I wonder if wall push ups really work?) You ARE right, exercise helps, but I pushed too hard too and the loss of core strength I may never recover is heart breaking. I denied my diagnosis for years and just pushed through it for 7 years. Diet is the hard one for me but I’m trying. I’m also ranting. Thank you for this post.

    • I am sorry you have both diagnoses, that must be very challenging for you. I wish there was a magic pill for fatigue, it’s my worst symptoms too. I would personally find that exercise program too intense. I think movement is good when you feel up to it but never push it and start small. Good luck with the diet changes

    • Catherine S Reply

      It sounds to me that you may not have the right doctor for you. When you describe him as someone who “blinks” in response to your concerns, it makes me concerned. Have u tried looking at healthgrades.com or vitals.com? I find most of my doctors this way(making sure they take my insurance of course) & have found some amazing doctors.

      Ps. Rant away…we all do it sometimes 🙂 ((((((gentle hugs)))))

  7. Thank you for this info. It’s great to know I’m not alone in this. I’ve been struggling with this for a year and I can’t seem to figure out how to control it. This definitely helps a ton. Main points: diet and exercise! Those are key. But how can you do either with so much pain? Slowly! One day at a time. One day you walk 30 minutes the next you do 10 the point is not to give up. This was very informative. Thank you for your tips and for opening up about your own struggles. God bless you.

    • Hi Elie, you are definitely not alone 🙂 Diet and exercise are important for sure and personally, I like to think of exercise in terms of restorative movement. It’s about finding the right type and duration that suits you. For some that will be gentle stretching or Qi-gong, for others it may be swimming or walking. We are all individual and we need to make adaptations to suit our needs but movement is definitely key to helping manage the condition 🙂 Thanks for your comment.

  8. Hi. I was diagnosed about 6 months ago. But I’ve had pain for years. I started reading articles right away. Information is the best tool. Diet and stretching have helped me so much. I’m on lexapro which helps and I take vitamin D supplements and a multi vitamin. I also have osteoarthritis and it was discovered that I am D deficient. Taking D has helped with the joint pain. Lexapro has helped with sleep and stretching and diet have helped the most. With the diet changes (cutting out bread, starches, sugars and all processed foods) I’ve lost 30 pounds. I still have pain at times but I’ve also tried to ‘let things go’. This for me has be a great help too. Life is too short for the drama. I value my better self so much more now.

    • Hello Carol, I am sorry to hear you were diagnosed with fibromyalgia but I am pleased you finally have an answer for why you are in pain. It’s great that you are being proactive about your health and educating yourself. I absolutely agree and I definitely champion the idea of being our own health advocate. It is so easy to be Vit D deficient and I am glad to hear that supplementing has helped to ease the joint pain. Well done on your weight loss, that is an amazing achievement! Letting things go is a great attitude to adopt as keeping stress to a minimum is definitely a good idea. I love your positive outlook on life 🙂

  9. What a great list! My number 1 suggestion to fibro patients is mourn ur previous life. Go thru all the stages and then u can realize your current capabilities. Second pick one thing every day that you can’t do with out. For me a shower! If I can do that maybe I can get dressed…and so on. Everything else is optional but NOT the shower! My gp has been patient with me as I dig my heels in about meds and as new things like high blood pressure crop up and require meds she suggests something otc like melatonin for sleep! Love her! Ps had last baby at 41. Diagnosis 20 years ago!

    • Thank you Sheri for your kind comments and thank you for your great suggestions. I absolutely agree that it is important to grieve for the things you have lost in order to be able to focus on the here and now and what you can do. I think it’s also a good idea to make a list of one or more non-negotiables as this definitely helps with feeling as well as possible. I think when it comes to medication, they of course have their place but I think being guided by your intuition and looking at all your options is a positive thing. It’s great that you have such an understanding and supportive GP.

  10. Catherine S Reply

    HI,

    I call Fibro the disease that keeps on giving. Whenever I adjust to how things are, a new symptom pops up. I appreciate all your tips because they are great and I can relate to many. I would just like to remind everyone that it is true, everyone has different levels of pain. Honestly, I don’t think that Cathy was in any way trying to say that you have not suffered. I read it more in that she wishes that she were able to get same relief as you have achieved. I love that you commented how changing diet is not a cure. So many well meaning people have pushed themselves upon me personally claiming they knew someone cured by diet. I know I’ve been blessed in that my specialist takes the time necessary to figure things out with me. He has always been open to suggestions & is very understanding. I feel heard when I go to his office.

    That being said, I am also envious in some ways of some of the things you have found that work for you. I tried stretching. Very very light, and put myself in bed for a week. I tried floating in. A pool. Can’t call it swimming when I had a “floaty ” on and literally just slowly moved my arms for 15 minutes….2 weeks in bed. Physical activity makes me worse. Especially in the winter. The winter is unbearable. But I am blessed to know this because we are now moving to a warmer area of the county so I never have to suffer that way again. My hope is that when we get there I will be able to slowly build up a tolerance to the pool as we will have. One right in our yard. I found driving made things worse and of course I had to drive to the pool before.

    I have been in pain for over 24 years. Obviously things have worsened considerably when my nerve damage in my neck became hypersensitive leading to my entire nervous system joining the party. I am no stranger to pain but this disease literally kicks me in the –s during the winter. Much as you did, I initially tried to work through and push through the pain. I clung to my independence like a security blanket. My doctor told me to stop working and I was going to show him. By the time I stopped 6 months later, I literally had lost my ability to speak! I learned that when I care for myself the neurological symptoms decrease and that included cutting the negative, drama filled, toxic people from my life.

    So often we are judged by others when we admit that we take medication to help just get the laundry, dishes & dinner done. I agree that medication alone is not the answer by any means but I can tell you that without it, it would be impossible for me to get the little I can do, done. I am on a total of 7 different medications. One is for my thyroid. The other 6 manage different layers of my disease. When I take the time to explain how it works for me, it’s like that book in the obstetrician with the clear pages. When u first look t it, you only see the outer layer but each page removes a layer till u find the baby in the middle. I also have always made sure to keep my pain med doses just below any points that it could make me loopy. That’s not how I want to live my life. So yes, I’m still in pain but I’m not a walking zombie either. Lol. One of my meds helps with my severe fatigue. Before this medication, I slept 18-20 hours a day. And never felt rested. I still don’t always feel rested but at least I’m awake for my life. I take a muscle relaxer for the severe muscle spasms I suffer from because of the nerve damage. I can take up to 4 a day but usually only take one. The newest exception was just this past week when I had a 6 day long migraine again being caused by my nerve damage. I figured let me take an extra dose (so 2 in a day rather than one) and see if it helps. I took 2 for 2 days. It worked. I’m back to one a day. I take an anti-inflammatory for osteoarthritis in my spine that honestly has saved my life at times. There have been a couple of times that I didn’t get my prescription refilled for one reason or another and I am quickly reminded just how much good it’s doing.

    We tried different things till we got the best combo and honestly we literally just changed a dosage of my gabapentin this month. (Just switched to it about 3 months ago, want to lose weight that LYRICA added on me-50 lbs from that alone) That week I caught myself dancing in the kitchen while cooking(yep paid for that but it was worth it). I also found my voice again. I used to go to karaoke 3 times a week. My house was full of my singing throughout my children’s lives growing up. I haven’t really sung in over 3 years. I still haven’t been back to karaoke but at least I’m singing again. My puppy freaks out and looks scared every time I sing. He’s a year old and never heard me before. He will get used to it :). I know that you know that different things work for different people & obviously it takes more than meds to live our lives the best we can but depending on the person, sometimes it can be an extremely useful tool to help quiet those many levels of pain.

    With such a stigma placed on the pain medication it can be very difficult emotionally to even start taking them. I was never a person who took anything more than Advil when things were bad but when the Fibro kicked in I was willing to try it. I had problems getting my prescriptions filled by the local pharmacies because honestly, they aren’t managing their inventory well. When you have a patient who fills the same prescription every month you should make sure you have it in stock fir your established patients and then new patients may have to wait but after the first month, they should adjust their stock. So initially, I ended up calling and driving all over to get my prescriptions filled. That alone can raise a red flag and cause you not to be able to fill your prescriptions. Not to mention the judgement all looks and comments I received from pharmacy staff and even pharmacists at one point. I was lucky enough to find a family owned pharmacy that manages their stock properly. In the 2 years I’ve been going there, they only did not have my full prescription one time and that was the suppliers fault.

    I think it’s important to acknowledge that for some people it is an important and helpful part of their treatment and when taking it at the prescribed doses for legitimate reasons it can be helpful. It’s not for everyone. And truthfully, it shouldn’t be. I understand that none of us should ever give up hope but I also have been where Cathy is just a couple months ago. For me the difference is the season. While you don’t want her to compare her start to someone’s middle, you are assuming that she isn’t in her own middle. I hope you don’t take this wrong because I most certainly don’t mean any disrespect nor do I ever want to minimize your own struggle but it feels like your comment to her was actually minimizing hers in a way. I feel it’s so extremely important for all of us who suffer from this disease and truly understand what it means to have Fibro to be there for each other and always be supportive of our individual journie to find relief, peace & happiness in our new lives as we all learn to live differently than we did pre-Fibro. Ty for listening. I appreciate how much you are trying to help others as you yourself learn what helps you. Have a wonderful day! May it be as painless as possible for you today. (((((((Gentle hugs)))))))

    • Hi Catherine
      Firstly, thank you for taking the time to write such a comprehensive and well thought out reply. I really value your insight and comments. I think that’s a great name to give fibro! I know exactly what you mean. I would find myself to-ing and fro-ing to the doctors because my body decided yet again to throw a curve ball. I think it’s always worth getting new symptoms checked out just in case it is something else but I have learned over the years that fibro has a seemingly endless list of weird and wonderful symptoms.

      I absolutely agree. We are all individual, not only in what we experience but how we experience life with fibromyalgia. No two people are the same and I’ve also come to appreciate that things change even within the same person. It is a very variable condition.

      Yes, diet is very helpful but it is not the be-all and end-all and it won’t cure you like you say. I think nutrition is important when we are chronically ill; ensuring we fuel our bodies with what it needs and it can also be a great tool for reducing pain and inflammation. But we are all individual and each of us may have different tolerances/intolerances. I think the main thing is a diet rich in natural foods and that is low in processed foods and sugars. But that is good advice for all in my book 🙂

      I appreciate your comments and I want to clarify that I had no intention of any disrespect towards Cathy. When I was talking about “don’t compare your start to someone else’s middle” I was talking figuratively; it’s a figure of speech I use to mean comparison is not helpful and I’m not implying anything about where she is in her own journey. Rather it was intended as a reminder that no one is in the exact same place. We are all going through similar things but we are at different points along the path. From my own perspective I know I could (and still can do) get myself down about things when I see others achieving what I wish I had for myself. I can need a gentle reminder that at one point that person would have been exactly where I am and that they aren’t lucky to get where they are.

      Please don’t be envious of me. We are all individual and I am sure you will manage to do things I struggle with and vice versa. Also, like I have said before, I share a fraction of my life on this blog. I may be able to do stretches but to put it in perspective, what I can achieve is variable depending on the day and I have been working away at this for almost two years now. My starting point was struggling to even tie my own shoe laces– even when sitting down– and needing help to put on long sleeved tops because I was so stiff and sore I couldn’t do it myself. The daily trials, tribulations, setbacks, ups, downs (and many tears!) aren’t here to see on the blog. It’s one of those things that, with hindsight, I wish I had videoed, to show the before and after but I was far too embarrassed! I had to start incredibly small with the tiniest movement and only for a few seconds. I looked so far removed from what I was trying to achieve. Even now I can’t do things perfectly, especially with my left side as I have problems with the muscles in my left leg.

      I absolutely empathise with the concept of exercise making you worse. It does for me too. I started with literally seconds and have built up very slowly (frustratingly so!), with many setbacks along the way, and I’m only able to do specific things. Others will wipe me out completely. I don’t think in terms of exercise but rather in terms of movement and I consider absolutely everything I do in a day; literally any movement from as simple as brushing my teeth. I have an energy budget and I need to stay within it and this includes mental tasks too. If I step out of it, I’ll put myself in bed.

      Winter is always tough and I hope you get some relief now it is summer. When it comes to the pool, be mindful to start small. 15 minutes is a lot. 30 seconds is a better starting point—even shorter if you need to– as ridiculous as it may sound. And remember that while you are floating you are engaging and using core muscles so it is a lot to someone like us 🙂 It’s great you have a pool in your yard now. Driving is a huge energy drainer—I can’t drive at the moment so I completely understand. It’s tops my list of energy drainers.

      Just to clarify my point on medications again, I have nothing against people using them at all. I think they are an important tool for many. It’s fantastic you have found a combination that works so well for you and I am pleased to hear you are singing again, that’s truly wonderful. To me though, medications are one piece of a very large puzzle and they sadly don’t work for everyone. I believe there needs to be more research and better options made available for patients. When you look at the statistics of the three FDA drugs, the number of people they significantly help is shockingly low. We deserve better. If someone came up with a medication that took away all my symptoms tomorrow, I’d be on it! Sadly, that doesn’t exist and my personal experience with medications has not been a positive one. I’d be interested to know which med helps with your fatigue?

      Sending gentle hugs and I hope you have a lovely weekend where you are feeling as well as possible.

  11. Catherine S Reply

    Thank you so much for clarifying. I never thought your intention was to judge though I did want to let u know how it could come
    Off. As you know, we can all get defensive sometimes because it feels quite often that so many people out there(not here) are judging…..not to mention the judgements we place upon ourselves for not being who we think we should be or doing what we think we should be able to.

    It’s so great to hear how far you have come. And no I don’t think it’s silly at all to start with 30 seconds. I get completely what u mean by that energy bank. We have someone come and clean every other week but of course I have to make sure the dishes are done and the sheets to cover the couch are washed(fiancée OCD and we have pets. Only way to let them on the couch. Lol) and the groveries I didn’t finish scanning and putting away(I am part of a Nielsen program that I earn points to get prizes for scanning our purchases…& I do one big shopping trip once a month when I get my disability money soooo it’s a lot of work for me). I did all that yesterday and last night through today I feel like I was hit by a truck. Lol I try to spread things out but it just doesn’t always work out.

    The no driving thing is definetly something I can relate to also. I had an accident (the first one ever that was my fault). I had dropped my full coverage 2 months before to save money & the damage was worth more than the car. So now I have no car. It’s good and bad because I can’t go to the corner to pick up a couple things but it also forces me to not go further than I can anymore. The accident was because I overdid it that day and just wasn’t sharp enough to realize that stop and go traffic had stopped. Thank God no one was hurt. They were actually really nice. The police officer didn’t want to leave. He said it was the most pleasant accident scene he had ever been to. lol.

    I take Nuvigil for my fatigue. I’m able to get it because I also have sleep apnea because it’s an off label use for it. But it works. I still fall asleep sometimes during the day but it’s nothing like before.

    The scariest thing for me is that the symptoms are so diverse that they can be the result of other things sometimes and you can never just assume it’s the Fibro. I also have a benign brain tumor and if it grows and starts to be symptomatic, I wouldn’t know because I already have the symptoms from the Fibro. So I get Mris every 6 months to make sure it isn’t growing. To top everything off, 2 years ago I was diagnosed with a very rare form of breast cancer. Luckily I knew immediately from the symptoms that I had breast cancer and found the best doctors possible. I had a double mastectomy with reconstruction and it is completely gone. My doctor said that if I hadn’t been so proactive I would be dead in 5 years because there is no treatment that works on this type of bc. So thank God that’s a part of my past. I took some
    Pictures thoughout different phases of my treatment and have been working up the courage to blog about my experience. Eventually I will get there. I haven’t actually touched my blog in ages but I feel myself getting there.

    If I haven’t already shared this, I would like to now. I suggest to everyone I know who has any type of chronic illness that they should join patientslikeme.com. It allows you to input your conditions, your treatments that you have tried, side effects, what worked, what didn’t, how you are feeling on a day to day basis. You can also see what has worked for others with the same conditions and there is a huge amount of support there as everyone is in the same boat. The best part of it all is that all your information that you share can be shared with researchers if you want it to. It’s anonymous data they recieve and they are using it to find better treatments & hopefully to try to find a cure. I was able to participate with a webinar symposium with the FDA on patientcentric care and what patients prioritize as most important for any medications and research to focus on. It was really great to be able to use my experience to possibly play an even tiny role In finding a cure.

    Have an amazing day and be as painless as possible today! ((((((((Gentle hugs)))))))

    • I would never judge anyone and I guess that’s the problem with written communication; it can sometimes be read in a manner it wasn’t intended. So thank you for making me aware of how I may have came across.

      Thank you. It’s been a long, hard road and I still have a way to go. I know what you mean. I’ve had to learn to let things go and accept help. Though I appreciate I am in a privileged position because I do have people to help me. I know not everyone is so fortunate and that makes things even harder.

      I’m so sorry to hear you were in an accident and I’m pleased to hear no one was hurt. It would have been a real shock though.

      That’s interesting about nuvigil. Thanks for sharing. I’m fortunate not to suffer from sleep apnea. I can imagine it would make everything else so much worse so I am glad your medication helps you to better function.

      You make a very important point never to make assumptions. I am sorry you have suffered so many health problems. It must be a scary and difficult thing to go through. It really emphasises why we need to be proactive and be our own health advocates. It’s good your doctor is monitoring things and I hope everything continues to go well for you.

      I’ve never heard of patients like me before. Thanks for sharing this resource.

  12. Catherine S Reply

    Ps. I have been slowly lessening the amount of sugar in my diet & had at one point stopped eating bread altogether but learned that by doing so I only made myself crazy for carbs so now I keep it in moderation and rarely have white bread. I also swap out sweet potatoes for white potatoes in most of my recipes. My doctor called them cancer food and that was all I needed to hear to make that change. I find sugar the hardest because I’ve always been a sugar addict. Lol. My mother had tried to keep us from eating any at all resulting in my binge eating entire packages of pathmark brand creme filled cookies when we went to my aunts house. Lol. Didn’t exactly work the way she planned. Now I just try to keep everything in moderation so I’m not overdoing it. I’ve been buying more organic veg and avoiding harsh cleaning products in my home. All that being said, I lost 5 lbs in the last month. I just hope it keeps going. I’ve literally doubled my weight since meeting my fiancé 9 years ago. That being said, I was underweight to start. Gained around 35 before my 40th birthday. Then 50 from meds and another 20 from my sedintart lifestyle now. If I could lose that 50 from the meds though. I would be happy. And at a healthy weight then. So yea I agree completely that a healthy diet helps 🙂

    • Sugar withdrawal is hellish and when I changed my diet for the better it was so difficult going through that. I wasn’t aware of how much sugar I ate and so much can be hidden in foods. Well done for taking such a proactive step and also for your weight loss.

      I think your point about moderation is key. I think keeping a healthy relationship with food is important and it’s about learning what foods do and don’t agree with you. I actually choose sweet potatoes over regular potatoes but I am trying to avoid night shades to see if that makes a difference.

      I also agree that avoiding harsh cleaning products etc. is helpful too. If we are going to the extent of being mindful about how we eat we probably need to be aware of the toxins around us and what we also put on our skin 🙂

  13. Catherine S Reply

    I have to say that I have really enjoyed our conversation. Thank you for letting me share with you and for sharing with me. Life always seems a little easier knowing we aren’t alone in all this! Have a great day and as painless as you can ((((((gentle hugs))))))

    • Absolutely, we are all in this together 🙂 Thank you for taking the time to comment and chat with me

  14. Francina Ferguson Reply

    This was Great!!! The introduction to this 8 things article was inspiring and it let me know that I am not to far off of the way I am trying to do things. It has also gave me strength to hang in there. I am going to share this article with the Hope it will do the same for others. Thanks, Thanks, Thanks. Thank u so much.

    • Hey Francina, thank you. I am so glad you find the post helpful and I am really appreciative of you sharing it with others.

  15. Thank you for your article. I also have fibromyalgia along with lupus and sjogrens syndrome. I’ve had to completely change my diet by going gluten free. One of the medications I’m on for TMJ (jaw issues and migranes) causes severe taste aversion so I’ve stopped drinking anything but water and stopped eating a lot of the unhealthy food. It also caused me to stop eating almost all fruits. I just couldn’t tolerate them anymore. The diet changes have really helped me. The first rhuematologist I saw last year (I’ve only been diagnosed for a year now) told me I was just fat and my joint and muscle pain was just fat build up. With proper treatment with a new dr, I’ve already lost almost 80 lbs but nothing has helped the fatigue. I also have to stretch several times through out the day just to last 8 hrs at work. One thing I have found extremely beneficial is therapeutic massages. They help keep my muscles from knotting up too badly. I also have myofascial pain syndrome so just touching me sometimes hurts. The massages help with that too. I have found that my biggest issues have come from everyone around me expecting me to be able to do everything exactly like I used to be able to. I have always been one to hide my pain and just do what needs to be done so if I complain about something, it is beyond normal. However, others think I’m making it up and want to make rude comments about it. It’s hard to keep stress down when your friends and family make you feel bad for being sick.

    • Hi Tamara. I am sorry to hear you are dealing with multiple chronic illnesses. I’m glad to hear diet changes have helped you too. It sounds like you are making positive progress and are finding out what helps you. It must be hard when those around you don’t appreciate how your conditions affect you. I too used to hide everything and I learned that it sometimes worked against me. Opening up to those closest to me opened up the opportunity for me to gain a great support network.

  16. Anne Baker Reply

    I just found this on Pinterest. I appreciate your blog and the thoughtful comments. My initial problem with Fibro was having a high pain tolerance with a stoic I’ll push through attitude. Think that pushed me over the wear/use limits that should be available when we are born???? I’d had bad knees and pain for years, worked in a physical job (RN in ED)with stress on and off job. I finally admitted I needed to do something when my cat standing on me was not tolerable. So I think number one for me was to admit I had an issue. I’ve had it for about 10 years. Exhaustion has been a big problem. Pain is par for the course. Lyrica put me under the table, can’t stand being snowed or out of control. Found a Med for sleep apnea (which I have) really helps keep me much more alert during the day. Magnisum has been a very good thing along with 5HTTP. Pain meds help has well. Admitting I can’t do what I used to and taking rest breaks help. This past winter my leg went into total intolerable pain. I was angry some sniper wasn’t putting me out of the hell that took control of my life. I was told bursitis and my hip was injected 3 times. Helped a little. My doctor is understanding and kind. He regularly gives me injections in trigger points like my neck that help considerably. Tried PT that helped some. I discovered that it is not uncommon for knee replacement folks to have trouble with tendons and ligaments. I finally agreed to see a healer massage therapist. Big deal for me because being touched is awful. She said my ham string was very tight and muscles were wound up. She worked on releasing trigger points and the muscles. I’m doing stretches. It has been much better. So my advice is listen to what your body is saying and be open to possible fixes. I was totally closed to massage for example. Admit there is more than one way to do everything and give yourself a break. If you need to take something for pain do it. Hope everyone has a restful night’s sleep.

    • Hi, Anne. Thank you for your kind words. I think it’s a difficult adjustment and I can completely relate to your putting on a brave face and pushing on. I too did that until my body could no longer do it. I buried my head in the sand and didn’t want to accept that anything had to change. That’s great advice. I think our intuition is powerful and we need to listen and be in tune with our bodies. It sounds like you are open to finding and trying different things and that you are making progress. I hope you continue to find things that work for you and help you live as well as possible with this illness.

  17. Sophia Ossowski Reply

    Hello there i am Sophia from Holland and i had the diagnose 3 years ago. But i have 30 years fibromyalgie and the dockters havend give me all the time no diagnose. That is hard because i had sufer and sufer. Now i can give it a name. Said there is no cure to heal fibromyalgie.

    • Hi Sophia, sorry to hear you have been suffering for so long. It does often take a long time to receive a diagnosis and that’s worrying. There is no known cure but I certainly believe we can make significant improvements. I hope you find lots of useful information on my blog.

  18. Vitamin D has helped me a great deal. I take 4000 units a day. I also take magnesium with calcium and a whole host of B vitamins. I KNOW diet makes a difference but I get in a vicious cycle of pain-comfort food-pain….

  19. Kelly Campbell Reply

    Try to make sure your family understands what you are going through, and the changes you, and they, are going to have to make. It hurts me to raise my arms to put dishes away, take laundry out of the dryer, push a shopping cart. Sometimes just breathing, or my clothes rubbing my skin hurts. This is not something that will go away with ibuprofen. They need to know as much as you do.

    • Hi Kelly, this is a really great point. It is absolutely worth opening up to your family and letting them see and learn about your struggles first hand. Thank you for sharing!

  20. Hi, I’ve never have had much luck with the diet route. I just feel very weak more so than usual and can’t get out of bed. After a month of that plus the cost, I go back to my meat and veggie diet. I do function on medications. I take one for everything from migraines, RLS, ISC, Sleep,(found one that works without sleep eating a and a hang over the next day after 20+ years) depression, anxiety and pain. I am functioning my best in 29 years with fibro. I take lots of supplements too. If you have not been checked for your Vitamin D level or Iron it could be low and a supplement could make a significant difference in the way you feel. Same with Magnesium Oxide helps with muscle pain and other symptoms. So don’t think no drugs are the best answer the right grouping and light exercise can help you get through the day. Especially if it’s a warm pretty one. Always can get more done on a pretty day…
    .

    • I’m not sure what diet route you went down but I think it’s a very individual thing. Eating your meat and veggies, sounds to me, like a diet free from processed foods and one full of nutrients so that’s definitely good for health! It’s great meds and supplements are helping you. I never say to people not to take meds but that they should be used in conjunction with other strategies as you rightly say. You are spot on with what you say about vit d, magnesium and iron too. I’d add b vitamins to that listas well. Unfortunately for me, I’ve never tolerated the typical fibromyalgia meds but that’s not to say I am against their use:)

  21. I wish I would’ve been told 11 years ago I may have a fibromyalgia condition as it was noted in my records with my back doctors that I was seeing for 5 years. I had no idea. No recommendations to a rheumatologist. It wasn’t until last year when my pcp in my new state looked over my records I gave her from my past that she showed me and I did look through those same papers before I gave them to her but did not catch it myself. Did my research. Everything falls into place. I’m still on the beginning journey of changing diet. Eliminating processed foods. By organic whenever possible. No meds at all I told my doctors,(previous abuser). I struggle, dear lord do I struggle to just stretch. I need to excersise but have to get stretching down first I think. I feel like all my muscles are dystrophied. I also have had a foot problem the past 4 years. Still slowly recovering from foot surgery. Does FM affect recovery because I should be far more ahead? I also didn’t take the percaset they gave me for postop pain. That could also be why I feel every thing. My stress management is still a work in progress. I feel like a basket case. I wish I also would’ve learned about the benefits of yoga for my mind and body.

    • I am so sorry that it took so long for you to discover you had fibromyalgia. It sounds like you have found a much more supportive doctor now and I hope this is the start towards better health for you. Good luck with your diet, it sounds like you are on the right track 🙂 Starting to stretch is very, very difficult. I wish I had filmed myself at the start so that I could show the comparison between then and now but I was too embarrassed at the time.

  22. Thank you !! I’m going through the shock of having to slow down. I just had to make the stressful decision to quit my job. I’m on long term sick leave now. I’ve decided to give the job up but haven’t told my boss. I know I have to concentrat on me for now. I will be 50 this year. It’s hard to believe. In my mind I feel younger but my body feels so much older. Thank you for giving me hope with your article. One day I will feel better. Right now I am slowing down. Thank you.

    • Hi, Tina. Slowing down can be so difficult to come to terms with but I have to say I really admire the fact that you are able to embrace change and have decided to do what is best for you. It’s upsetting to have to give up something you never saw yourself having to. But at the same time, this could be what leads you to a better quality of life overall 🙂

  23. Thank you! I am going for an appointment this week after suffering for years to a fibromyalgia clinic. I am both worried and relieved that I will finally get the answers I need. Your positive words have left me feeling hopeful for the future.

    • Good luck with your appointment Wendy! I hope you finally get the answers you need 🙂

  24. Margaret Wilson Reply

    Hello Donna and all correspodents.
    Here is a short list of the solutions I have discovered,during the last 30 years, to some of the problems we all face when living with fibro.
    To help comfort our stiffened joints and ligaments,as well as our gentle stretches, try using a rebounder trampoline. My household bought one for me out of the savings we had made on not buying junk food,it lives in the back porch and just a few steps a day really helps me to move even when in pain.
    In common with so many of us searching for a diagnosis when suffering the onset of this baffling combination of symptons,give these alternative treatments a go -a Reiki massage once took away the pain of an intractable migraine, and a Shiatsu session worked such wonders that I walked home (a few hundred paces) and did far too much cleaning and tidying, then had bearly the energy to breathe the next day. I have tried other alternative treatments, but these are the only two that worked for me, and I must emphasise that a small cocktail of prescription medication including Pregabalin and Amitryptilline, has to be taken without fail in order for body and mind to make it to the end of each day.
    So many of us have struggled to carry on juggling work, home, and increasingly burdensome symptoms, feeling so unworthy once we have had to lose our work identities,and by the very effort of concealment isolating ourselves, that finding a forum such as this, so sympathetically hosted, is a very welcome lifeline.
    What next? Learn kindness, to our rescue animals, to our all our human friends,and to ourselves.
    Kindest regards
    M A Wilson

    • Hi Margaret, thank you for taking the time to share your tips and experiences. It’s great to hear that a rebounder trampoline helps you, I’ve actually been thinking about trying one as a way to increase exercise. I agree that Reiki is wonderful. I haven’t tried Shiatsu, so will keep that in mind! It’s great that prescription meds are helpful to you. Unfortunately, I experienced little benefit and a myriad of side effect that didn’t make them worth it for me personally. I think it’s about experimenting and finding what works for each of us 🙂 I am really happy you have found my blog and yes, I absolutely agree that coming together and supporting one another is so helpful. Chronic illness is such a huge loss in many ways, and having a support network of people who “get it” is worth its weight in gold.

  25. Beth Harrison Reply

    Hi Donna! It took 6 years, seeing more than 3 doctors, and living in a state nearly 1,000 miles away from my home to be diagnosed with fibromyalgia. Since then it has been as you stated in your article, a process of seeing what works, and learning what doesn’t. The most helpful thing I have ever done is learn to give myself a break, and not push my body. Simple, gentle stretches are necessary to and help relieve/prevent headaches, and keep my muscles, and joints as healthy as possible. Walking on level surfaces helps greatly. I do take a very low dosage level of muscle relaxant on the days when the pain is more intense. The doctor who originally diagnosed my fibromyalgia condition, and prescribed the muscle relaxant explained that the constant pain causes muscle tension which results in pressure and stiffness on the joints. The muscle relaxant relieves this pressure. Another treatment option I am now following is with working on healing my adrenals with Dr. Eric Berg who has a lot of information on his YouTube videos. Perhaps the best advice, is the one you have already given – be your own health advocate.

    • Hi Beth,
      I am sorry to hear you had such a long, difficult road to reaching a diagnosis. Sadly, this seems all too common. You are so right in what you say here. Pushing ourselves can cause so many problems so learning to give ourselves a break and show ourselves compassion is really important. It’s good to hear that the muscle relaxant is helping you and I do think that when we are in pain there is the tendency to tense up, which creates even more pain. Good luck with working on healing your adrenals, I feel this is definitely an area that’s worth considering. And yes, becoming our own health advocate is so important. Thanks for taking the time to comment 🙂

  26. Wow, I love Pinterest even more now. I also suffer from fibro. So much that is said in these posts; I can so relate. I also have back issues, had surgery in 1996. I have Interstitial Cystitis (a bladder disease). I have anxiety, depression, panic disorder and the big OCD. So perfection and getting things done has been a very difficult time for me. If I am feeling half way decent; I get things done to the point of hurting and then suffer for days. I also take pain medications and struggle with the stigma of pain medications. I have lost family members due to fibro. I hear you should do this, you should do that, take this, take that. How about I just pull my hair out because some of them don’t understand or attempt to understand. It’s very heart breaking at times. Oh yes the ole Gabapetin and Amtriptaline, sorry for the misspelled meds. Yes, I got some relief; but had the most horrible side effects. I had surgery on my right shoulder due to it becoming a frozen shoulder. I have my melt downs, however, on the other side of that; my husband, grown children, grand babies and daughter in law are amazing support. I agree; it’s very difficult when others are doing something and I can’t join. I have became house bound; but getting better each day. I have to be very careful what I eat due to the IC. I have my list of foods that may cause issues to the fibro. It hasn’t been easy at all. I am dealing with Social Security Disabiity; which has been a stressful disaster. I sleep hour after hour also. I cherish the time I am awake. It makes it a bit more difficult also; my husband suffers from PTSD from the military. We have to take care of each other. I can no longer drive due to the loopiness of the medications. I have been on the lowest doses for a very long time and still get loopy. I can feel the need for a increase. I have always had a great relationship with God; since being diagnosed with fibro, our relationship is beyond amazing. That is the greatest thing that has came out of this. I have also learned different things about me. Thank you for all of the postings. I have known I’m not a lone with this disease. However, after reading these posts, I feel more hope. Thank you so much to all. God Bless and hope for a cure. ????❤️????

    • Hey, Connie! Pinterest is such a great resource. I am glad you found me through it 🙂 I am sorry to hear that you suffer from fibro too. It sounds like you have been through so much and I am sorry there have been those in your life who simply do not understand. Your mention of a frozen shoulder has reminded me of my friend Julie from CountingMySpoons.com. She had a frozen shoulder and has had great success from using a device called an Oska Pulse. It has been life changing for her. You can read her post about it here. I really love that you can see the other side of things and that you are far more than your fibro diagnosis. I hope you continue to heal and improve with each day. And know that you are most definitely not alone. Take care and sending gentle hugs.

  27. This has been so enlightening that I can’t process it all right now. Thank you so much for the great information. My husband and I have a lot to think about, change, modify, etc. I’m learning that it’s me at the end of it all. He tries and I appreciate that. I need to make changes for myself, feel better for me, before I can be better for anyone else.

    • Hi, Paula. Thank you for your comment. I am so pleased to hear you have found the post helpful. I think becoming our own health advocate is so important. And you are so right. We need to fill up our own cup before we can help those around us.

    • Hi Donna, Thank you so much for your post. I was diagnosed with fibro about 2yrs ago. I have a very supportive husband that has been my lifeline. After about 1 yr we decided that my working was not as important as my health. I left a job that was half our income we have had to make very difficult decisions but this was truly the best thing. I have gone through several internist to find a NP that takes her time and discusses alternate ways in treating my fibro. I was diagnosed by a neurologist and between the two I have made progress. I applied for disability but have been denied twice. Some I just keep going through the steps.
      I recently fell outside and broke both bones in my left ankle and had to have surgery. At times I just feel like I can’t get ahead. After 3 wks of being on the pain meds when I stopped taking them I had major withdrawal symptoms. Thankfully I survived and have a better insight on addictions. My advice to anyone going through battle after battle, is to keep going and have faith. Thanks for listening.

      • Hi, Lisa. It’s wonderful to hear that you have a supportive husband and you were in a position to make the right decision for you. Giving up a job can be such a difficult decision– and one a lot of people fight not to do– but sometimes change can lead to a better quality of life. I totally agree with you that health is the most important thing. I’m so sorry to hear you broke your ankle, that must have been so painful! I hope your surgeries went well and that you are on the road to recovery. It can feel like it’s always something coming up and blocking our path but you are right, we need to keep going. And, yes, withdrawals can happen if you suddenly stop medications so it’s always worth remembering to taper off them, even if it has been a short time 🙂 Wishing you well.

  28. hi i liked your blog but i got a (dubble yammy ) after the birth off my son i got symtems which ended up to be Lupus and fibrobyalgeya its been 10 years if its not Lupus its the fibromyalgeya and a few weeks ago from this date i went into A&E with so much pain that it felt as my whole body got polarised i am on stronge pain killers i suffer in the day but the main attack comes at night when the body relezes the pain stays for 9 hours it starts from my legs then comes up to my arms and the pain is unbearable after so much pain i am so tired as all my enagy has gone i not shore what i should eat as i always been bad in that area
    is there any thing u can gide me on i am on steroids too do to the lupas
    best regards shai

    • Hi Shai, I am sorry to hear that you have both Lupus and Fibromyalgia. I am sorry to hear that you have been in terrible pain. I would suggest getting advice from a nutritional therapist regarding what is best for you to eat. I know what helps me but we can all different in that respect so it’s always worth getting professional advice. For pain, it’s worth talking to your doctor to see if they can help you further but one thing that has really helped me has been the Oska Pulse. You can read my review of the device here. I hope you are able to work with your doctor to find a pain management strategy that works better for you.

  29. Vonnie Headley 07 07 Reply

    You mentoned dietary changes. I’m just curious what dietary changes helped you. I’ve noticed if I cut my sugar and starch not only do I loose weight I do feel better but it’s so hard to do. What other changes have you found that helps? I’ve been suffering from fibtomyalgia since the early 90″s and it Hasn’t really gotten much easier to cope with.

    • Hey, Ronnie! I too find cutting out refined sugars (and keeping my sugar intake low) helpful. I also do best without dairy products (I have an intolerance). Wheat is also an issue for me. A little here and there is okay but if I eat it regularly I don’t feel well… so I tend to avoid it for the most part. There are a couple of other random ones, like beetroot that will be specific to me— I find doing an elimination diet is helpful in identifying problem foods.

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