Hyperbaric Oxygen Therapy for treating fibromyalgia. And update on how I found this treatment

Back in April, I wrote a post talking about Hyperbaric Oxygen Therapy (HBOT) as an alternative treatment for fibromyalgia. Research on HBOT has received a lot of attention in the press over recent months and I decided to try this treatment for myself through an MS therapy centre. The initial course of treatment for fibromyalgia is 20 sessions–5 per week at 33ft for 4 weeks—followed by weekly top-up sessions. I knew this would be an intense process but I was willing to give it a go. I kept a journal throughout my treatment (which I made available to email subscribers—click here to sign up) but I thought I would also summarise my experience with hyperbaric oxygen therapy in this blog post.

My first week of treatment

My main concern prior to starting HBOT was that I knew I had quite a bit of travelling to and from the MS therapy centre. All-in-all HBOT took a good chunk of time out of my day to do—around 3.5-4 hours each session. I was worried this would exhaust me. Despite my concerns, I saw some positives from the treatment straight away. After the first day, I noticed a positive difference in my sleep; I fell asleep much quicker than normal, my sleep was less disruptive and the quality had improved (I track my sleep using the ResMed S+). The downside was that I woke up the next morning feeling heavy and very fatigued despite this good sleep.

Throughout my first week of treatment, I continued to have good sleep but by the end of the week I was experiencing an exacerbation of some symptoms. I was feeling more fatigued, which I had put down to the extra exertion of travelling and actually having the treatment, and by the Thursday, I was feeling irritable and anxious. I then woke up during the Friday night with a really sore throat and chest (symptoms usually associated with a bad flare up). Thankfully by the time I awoke on the Saturday morning these had eased, but they were definitely a sign I was pushing things.

I like to use a traffic light system when thinking about how I am doing. Green means that things are ticking along okay and I managing my energy, amber is a warning sign to slow and red is an all-out flare. I felt like my health was pretty stable before the HBOT started and I was green most days. By the middle of the first week of treatment, I was definitely into amber and towards the end of the week I was headed for red.

On the Saturday evening of week one, I crashed. I had my fifth session of HBOT in the afternoon and when I got home I rested for 20 minutes before taking my herbal therapies and then going for a bath. After I got out the bath, I was literally okay one minute and then the next I well and truly crashed. I felt heavy, fatigued, very ill (flu-like) and I hurt from head to toe. This is something I had not experienced in a long, long time. It was horrible. I spent Saturday evening in my bed, sipping on lemon water and lying on my head pad. I also used my Lightstim to help reduce some of the pain.

After a couple of hours, I got to the point where I felt more human again and so I was left wondering if this had been a herx reaction or if I had been a flare? Thankfully I had the Sunday to rest before beginning the second week of treatment on the following Monday. However, from the Saturday onwards the quality of my sleep decreased and the initial benefit I seemed to have gained from HBOT was lost. I think this was simply because I was pushing myself so much and, as crazy as it sounds, I’ve learned that I need some energy in my reserves to get a decent night’s sleep. If I am utterly exhausted, poor sleep is guaranteed.

Week 2 of Hyperbaric Oxygen Therapy

Throughout my second week I noticed that I had that horrible flu-like ill feeling hanging over me. This isn’t a new symptom. For the past (almost) two years my fatigue has always been accompanied with a sense of feeling unwell. The extent of it just varies and prior to starting HBOT it had been consistently mild. But by this point it had gotten worse again and it was horrible feeling really ill each day. Interestingly, this feeling sometimes lifted immediately after a HBOT session but unfortunately the relief was short-lived.

I also want to point out that after some HBOT sessions (unfortunately not all) I felt less foggy mentally and sometimes less physically fatigued. Again, this reduction in symptoms sadly did not last and they would return later in the evening or by the following morning.

At the end of week 2 I had also noticed a return in some symptoms I hadn’t experienced in a while; namely neurological symptoms such as pins and needles. I was also in more pain overall and all of this was having a negative effect on my mental health. I felt like I had taken a big step backwards.

Not only was I feeling rubbish but I was also spending a lot of time in my bed; I was either having treatment or I was in bed basically. This understandably made me feel quite low about the whole thing. As I felt like I was struggling, I decided that I would reduce the number of sessions I was having each week in the hope that it would help me to cope better.

Unfortunately, that wasn’t to be. After my 12th session of HBOT I had a flare. I knew on the day that I didn’t want to have the session of HBOT. In fact, that’s all I could think of on the way there; how much I didn’t want to do it. But I also had in my head that I wanted to get through the initial 20 session protocol and give this treatment a fair chance.

I had read in the published research that some participants reported feeling worse before they felt better and they started to pick up after 20 sessions (they did 40 sessions in the research). Everyone I had spoken to had also told me they were completely shattered during the initial protocol and so I just thought what I was experiencing was normal.

With hindsight, I should have listened to my body. Had it been anything else I would have taken the warning signs from my body for what they were; signals that I needed to slow. However, I let my mind overrule that and it didn’t pay off. I was advised to take a break for a week and then see how I felt. As I still felt really unwell after that time (not helped by some choices I made—I went to my friend’s 30th birthday when I probably shouldn’t have), I was advised not to continue with treatment.

Why I think it didn’t work out

Personally, I think it was all just too much for me to cope with. It has taken me a good month to overcome the setback HBOT caused. My health was very up and down for a period of time there and it was horrible going through this. It pretty much sucked given how well I had been doing beforehand. It was a slow process getting over it all but I am thankful that I am able to say I am now getting back on track again.

I don’t want to put anyone off who is thinking of trying this treatment for themselves. We are all individual and what works for one won’t necessarily work for another and vice versa. There were other fibromyalgia patients at the centre, one man swore by it and the others were just starting out but seemed to be doing better than me.

I think for me the travelling to and from the centre was a big issue. I also heated up during the sessions (when the air is pressurised the temperature increases). I found some sessions to be uncomfortably warm and I don’t think that did me any favours as my body can struggle to regulate temperature. I likely have ME/CFS alongside fibromyalgia so maybe that played a role in it too, who knows.

If the MS therapy centre was local, I may have thought to try again now I am feeling better; perhaps at a lower depth than 33ft and fewer sessions per week. However, when it comes to anything in life I think the best guide on what to do is to follow your intuition. My gut feeling is that it is not a good idea for me to continue with HBOT.  That said, I always think it is worth trying new things and experimenting. But, for me, this one didn’t work out successfully.

You can get access to the day-to-day journal I kept throughout this process by signing-up to my email list.

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Hyperbaric Oxygen Therapy for treating fibromyalgia. And update on how I found this treatment. Click to read or pin to save for later.

Author

Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

16 Comments

  1. Oh no…so sorry to hear this Donna. I really hoped it would help but it sounds awful. Hugs x

    • Thank you Ali. I know some people find it to be a relaxing experience but that sadly wasn’t the case for me. I don’t regret trying it but I’m glad it’s all behind me now. I hope you are doing as well as possible at the moment 🙂 x

    • Than you Sarah. It was disappointing but I guess it’s just one of those things. Sadly it won’t be for everyone 🙁

  2. Karen Hadder Reply

    I’m sorry it didn’t work out for you Donna…… I know how disappointing it is when you have your hopes up that something is going to help you feel better. I pray that my experience will not be as negative. It’s one thing to not help but another to actually make you worse when you weren’t doing so bad before ????

    • Thank you Karen. It is always disappointing but it’s just one of those things I guess. I’m glad I tried it as I would always be wondering “what if” otherwise. I hope you have a positive experience and that it helps you. We are all individual so I wanted to make sure I got across that just because it didn’t work for me, doesn’t mean it won’t help others 🙂 Good luck!

  3. I am just reading this now. I knew someone who went through Hyperbaric Oxygen treatments to no avail. If I am correct the study on HO therapy had participants that also had concussions and I think they probably improved from the concussions (the NFL is looking into HO therapy for their concussion sufferers) but that it didn’t actually help with the Fibromyalgia.

    Or, the study participants never had Fibromyalgia. I think I read that the participants were diagnosed with Fibro prior to being diagnosed with concussions but I think there is a little manipulation on diagnosis and the timing going on. For instance, people are sent to them for a concussion and they had a doctor diagnose them with Fibro FIRST and then the concussion but in reality what they had was a concussion.

    • I think it’s like everything, it will help some but not others. I’ve since learned that I do have low levels of oxygen but I also have low carbon dioxide. The carbon dioxide is needed to move the oxygen into your tissues. So I wonder if, in my case, it didn’t matter how much oxygen I saturated my blood with… my body must not have been able to use it. That’s interesting points you have made, thanks for sharing.

  4. Sorry you didn’t have a good experience with it. I’m just at the end of my first week and feeling exhausted. I’m only doing 16ft too! I agree everything’s worth trying though as you never know what will work for you. Xxx

    • I absolutely agree. We are all different and you never know what will work 🙂 I hope it goes well for you.

      • I had to give up after the first week too! We’re obviously just not made for that much oxygen! Xxx

        • I’m sorry to hear that but in a selfish way, I’m glad it wasn’t just me. It was so hard going! We must not be 🙂

          • It’s true! I just kept hearing people say what good results they were getting and there was me hardly able to get up! I’m back with other complimentary therapies now. 🙂 xxx

          • Donna

            I hope you are getting more positive results from the other therapies. I think it will be one of those things that is helpful for some not others 🙂

  5. I wasn’t able to withstand the Hyperbaric Chamber either. I think one of the reasons is because I later found out that people with certain genetic disorders it’s bad for. I just happened to be one of those potentially (with high potential).

    • Oh this is interesting and perhaps something I should look into. I’ve done 23 and me but haven’t yet got round to really making use of the raw data.

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