Possible Treatments for Fibromyalgia
40 Days in the Chamber – My 7-Weeks of Experimental Hyperbaric Oxygen Therapy (HBOT) for Fibromyalgia and How it Changed My Life
Just what is Hyperbaric Oxygen Therapy, you might ask…
According to the Mayo Clinic, “Hyperbaric Oxygen Therapy (HBOT) involves breathing pure oxygen in a pressurized room or tube.”
HBOT has been around for over a century, and you’ve probably heard of it being used to treat decompression sickness, or “the bends”. It is also used to treat wounds that won’t heal, burns, carbon monoxide poisoning, and several other conditions.
Ok, now you know what it means…
But, how could it be good for fibromyalgia, you ask next…(at least that’s what I asked, the first time I heard about it.)
Let me take you back to the beginning – 2016:
I first heard about this experimental use of HBOT about 3 year ago. Because I’ve always resisted the idea that there is no cure for fibromyalgia, I read everything I can find about current research and new studies.
That’s how I stumbled across an article describing a joint clinical trial conducted by the Sagol School of Neuroscience at Tel Aviv University and Rice University’s Center for Theoretical Biological Physics.
By the time I found the report, it had already been out for several months. So, I began to dig. And then dig some more. I watched videos. I scoured websites and medical reports.
If you don’t mind reading subtitles, one of the best videos I found talking about how the therapy seems to improve brain function is located at https://www.youtube.com/watch?v=sIhiYyk9VGo
To say that I found it intriguing is a huge understatement. The more I learned, the more excited about the therapy I became. I asked a friend who was a recent graduate from medical school what he thought about the possibility of the therapy helping with fibro. He hadn’t heard anything about using HBOT this way, but thought that it shouldn’t cause any harm if I decided to try it.
Next, I asked my doctor about it. He responded with something along the lines of “Well, it certainly won’t hurt you. And, it might do you good, even if for no other reason than you would be taking charge of trying something.”
But, there was a problem…My insurance wouldn’t cover the treatments.
And, therein lies the rub…
The research I found showed that people had the best results when they did at least 40 treatments in a row at a pressure of about 2.5 atmospheres. That was a LOT of treatments! This wasn’t going to be easy.
As I researched therapy centers, the price for a single treatment ranged from $200 to $2,000. Multiply that by 40 treatments, and we were talking about some SERIOUS money!
Then, there was another problem. The closest center to where I lived was hundreds of miles away. I would have to leave home for at least 2 months, which would add a lot more expense into the equation.
So, I put the idea on the back burner for a while.
My husband and I were going through a major move, trying to sell a home, and generally disrupting our entire lives. Treatments would have to wait. Besides, I told myself, with such solid research becoming more apparent, surely the insurance companies would get on board soon.
As an aside, I have to say that my husband was pushing me to get the treatments, no matter what it cost. He was ready to sell some big-ticket items, take a second job, whatever it took. (Gotta love that man!) But, I wasn’t ready to do that for something that was going to be a huge gamble. I’d been sick a long time, and there wasn’t any guarantee that HBOT would work for me.
Fast forward to March 2019.
We completed our move, sold our old home, and had some money to spare. I decided it was time to take the leap, so to speak.
After more research, I narrowed my search down to two centers that had good reviews and that I could afford. I chose these because I had a free place to stay with family, which would cut the expenses considerably. One was in southern California and the other was in Austin, TX.
After a lot of emails exchanged and phone calls, I decided to go the ATX Hyperbarics Center in Austin. I could stay with my sister-in-law for as long as I needed. This meant I could focus completely on doing everything possible to get better.
Next, I needed a prescription…
Because the treatments involved breathing pure oxygen, a prescription was required. I contacted my doctor, who sent one to the center right away. I would be doing 40 sessions, one per day, six days a week, at approximately 2 atmospheres of pressure.
I would have liked to have gone all the way to 2.5 atmospheres but the cost of the deeper pressure was going to be several thousand dollars more. The research that I had studied indicated that the 2.0 pressure would be enough to see improvement, if it was going to work.
So, it was finally time to get going…even though the insurance still wouldn’t cover the treatments for fibromyalgia.
I packed my bags, cooked up a lot of food to put in the freezer for my husband, and headed to Austin, 500 miles away.
Just a note: My husband is great at taking care of himself (after all, he’s had years of picking up the slack for me), but I wanted to do something special for him…
Thankfully, my work is internet-based, so I could work in Austin. I told my clients that I would only be doing the bare minimum, however. I was determined to give the treatments top priority.
What was HBOT like?
I have to be honest…I was a little scared. I’ve always been a little claustrophobic. But, I made up my mind that I was going to do whatever it took to complete the sessions. I owed it to my family, and to myself, to give it my all.
The first day was a little intimidating. The staff was great at ATX Hyperbarics, and answered every question I had. Finally, it was time to climb into the chamber. I was given an oxygen mask and shown how to secure it to my face properly. They also showed me how to use a walkie-talkie to communicate, if I ever needed to talk with them.
The chamber was roomy. I could sit up, or lie down, whichever I preferred. The “mattress” wasn’t very wide, but since I’m not too big, it wasn’t a problem.
There were three portholes that allowed light inside as well as a small light I could use for reading. There were also two pillows to use for relaxing or propping myself up in the end of the capsule.
Because I was going to a pretty high pressure, I wasn’t allowed to take any electronics into the chamber. I wore only cotton clothing with nothing metal, no zippers or car keys, nothing that might generate static electricity.
I also chose not to wear any makeup during the treatments, since the center didn’t want you to use lotions or perfumes. I saw others who did, but I decided to skip the makeup.
I won’t lie, it was a little stressful when they shut the door and I knew I wasn’t coming out for at least an hour and a half, especially since I’m pretty addicted to my electronics.
The oxygen started and immediately I could feel pressure building in my ears. It felt a lot like when an airplane cabin is pressurizing as it gains or loses altitude. The difference was, I had to adjust the pressure every few seconds. I really didn’t have time to think about anything else but that for the next 15 minutes.
At last, the pressure equalized, and I could take stock of what was going on. I felt completely normal. I had wondered if I would feel the pressure, like you would underwater, but I didn’t. It was just like being in a regular situation, except I was inside a big metal capsule.
The compressors that maintained the pressurization were a little loud, and I couldn’t hear much of what was going on outside the chamber. I could hear the murmur of voices of people talking, but I couldn’t hear enough over the sound of the compressors to understand anything.
Honestly, it was extremely peaceful. I lay back on the mattress, made myself comfortable, and relaxed. I prayed and thought about each breath, drawing it in deeply, and willing the oxygen to go wherever it needed to go to start the healing process.
The time flew by, and after an hour it was time to begin the decompression phase. Again, I had to give my full attention to equalizing the pressure in my ears. The staff manually released valves to slowly bring the pressure back to normal.
The only time I had a problem was the very last valve release. It was a slightly quicker change than the others and I was surprised. I felt a tiny prick of pain but it was nothing serious. Then, it was time to open the door. Easy-peasy.
I noticed that I felt really good when I left the center. I had gone into the chamber feeling pretty tired. It had been a hard trip to get to Austin, and I was sleeping in a new place the night before. Neither of which is easy for someone with fibro. But, I felt energized and clear-headed…something I hadn’t felt for a long, long time.
Just a little background on my symptoms before the treatments
For the past several years, I had dealt with daily pain, especially in the backs of my thighs and hips.
I also had a terrible time sleeping. Sleeping the whole night through was next to impossible. I would wake several times because my joints ached if I didn’t move frequently. It was a great night if I could sleep for a total of 6 hours.
I often had migraines and random pains in my teeth/jaws.
I took 2 Trazodone tablets every night to sleep as well as 2 Mucinex tablets, 5 Valerian Root and 2 Turmeric capsules. In the mornings, I took an Allegra tablet, 2 Mucinex and 2 Turmeric capsules and a Meloxicam for pain management. I had recently been drawing myself off of other prescriptions, since I worry a lot about the long-term effects of taking too much medication.
For the past few years, my thought processes had grown so clouded that I struggled to get through everyday tasks. To say that I had fibro-fog was an understatement. It was more like fibro-gel in my brain!
I quit my teaching position 5 years ago. I just couldn’t keep up with my duties even though I was only working half-time for two years. Fibro had stolen my life.
The Next Seven Weeks…
I kept a daily journal of everything I ate, how I felt, and what I thought about the treatments as they progressed.
The first day of treatment was Monday, April 15th. One of the first things I noticed that week was that I was ravenously hungry most of the time. I decided this must be my body craving what it needed to heal, so I ate whatever I was hungry for. I did try to stick to healthy foods as much as possible.
Each day I left the chamber feeling energized, and this usually lasted for several hours.
My skin felt smoother and looked clearer. I have had some serious bouts with numuloid dermatitis for years, and I noticed that my spots were improving.
By about the third day, however, I noticed my joints really hurt. They always hurt some, but it was worse than normal. I also had a sore throat and lots of sinus. And…I was really tired. This might have been the fact that I had been pushing hard to drive to the center and had a lot of adjustments to make as I settled into my sister-in-law’s house. Whatever the reason, I felt awful…
By day four, I was ready for a break. Thankfully, the next day was Good Friday and the center was closed. I rested for most of the day, just watching TV and reading on my iPad. I went to bed early and slept well for the first time since arriving in Austin.
Saturday was about the same as the other days. I felt rough and achy in the mornings, would drive to treatment and feel much better for several hours. Then I would run out of steam and have to power through to bedtime.
The center was always closed on Sundays, so that gave me another chance to try to get rested. I won’t lie, though, I felt awful on that first Sunday. I was beginning to wonder if I’d made a terrible mistake.
Thankfully, I had read about other people with fibro who had tried the treatment and knew that some of them described the first two weeks as really hard. If it hadn’t been for that, I’m not sure I would have continued. It was that bad.
The week started off very well. On Monday, the sixth day of treatment, I had a great day. My thoughts were clear all day and I didn’t hurt as much as I had over the weekend. I even went to the gym and walked on the treadmill for about a mile.
That was a mistake, because on Tuesday I felt much worse. My joints ached all day. That continued for the next few days.
The only time that I felt pretty good was when I was in the chamber breathing oxygen. By Thursday, I was questioning whether to quit or keep going. My journal entry for that evening read, “Many people hit a wall about two weeks in and many quit treatments. But those that push through see dramatic improvement by the fourth week. So, I must push on. But I hurt as much or more today than I have in a long, long time…right up there about a 9 out of 10.
“Lots of prayers…”
By Saturday, I noted that I felt a little better, but my ears were bothering me. At night, I would hear a whooshing sound in my right ear every time my heart beat. But I wasn’t feeling any pain inside the ear, so I didn’t worry about it too much. It was more of an annoyance than anything.
On Sunday, even though I woke with a headache, I was able to attend a nearby church. But the music was really loud and by the end of the service, I couldn’t wait to get out of there and back to some peace and quiet.
I rested all afternoon and felt quite a bit better by bedtime. My journal entry that night was much more positive and I was hopeful I had turned a corner.
Unfortunately, I had a very rough day on Monday. I was put into a different treatment chamber than I had been using and one of the valves made a loud whistling sound for the entire session. I should have notified the staff but since I didn’t want to go through the depressurization process and then be pressurized in a different unit, I just toughed it out.
The staff didn’t know I was having a problem inside the chamber. They couldn’t hear it outside. When I told them what had happened, they were very apologetic, and we decided that I wouldn’t use that unit anymore. No one else had complained about that particular chamber, but I was going to a much higher pressure than most people. Apparently, the chamber didn’t start making noise until it was at the maximum pressure. It was a simple solution to avoid that chamber from then on.
But, toughing it out was a pretty big mistake, because it set off a flare that lasted for the next few days.
On Wednesday, I had a change of pace, because my husband was attending a conference in Marble Falls, which is about 50 miles west of Austin, so I drove back and forth to spend time with him in the evenings. I still drove to Austin each day for treatment. Nothing was going to cause me to miss a session.
My husband said that as soon as he saw me across the parking lot, he could tell the treatments were helping. I guess I hadn’t realized how they were because the change was so gradual. He was ecstatic about the improvement and said I glowed.
On Thursday I began to have random electrical sparks go off for no reason in different areas of my body. This was a new sensation that I’d never had before and as far as I could tell there was nothing external that triggered them. They weren’t painful, just strange.
I returned to my sister-in-law’s house after the treatment on Saturday. Overall, I felt much better than when I had left. Two things that I noted in my journal that evening were:
- I wasn’t having any more electrical sparks and
- I could go up and down the stairs without any hip pain.
Prior to this, I had been in almost constant hip pain for about a year and a half after “tweaking” my IT band in the right hip. This was a very exciting development, because the hip pain had hindered my ability to walk fast. Walking is my primary exercise and I try to walk at least one mile every day.
Sunday was a very lazy day of watching TV, napping and eating. My entry for that day read: “Continued to feel very good. Almost no pain. Hip is barely felt, with no pain. Really relaxed and content.”
I settled into a routine, driving to the treatment center, feeling great after the treatment, working as much as possible in the afternoon and generally feeling much better and thinking much more clearly.
Wednesday, May 8th, marked the halfway point in the treatments. I had been able to reduce my sleeping medication by half, down to one tablet, and was still sleeping well.
I noted in my journal that my balance was much better. Always feeling slightly off-balance had been another problem that I had dealt with for years, so this was another welcome improvement.
I also noted that I woke up without pain that day. I couldn’t remember the last time that had happened, but it had been decades.
Unfortunately, the morning pain was back on Thursday. But, after the treatment, the rest of the day was relatively pain-free.
I still had the whooshing in my right ear, but it wasn’t getting any worse. When I asked the manager at the center about it, he said that if it got too bad or I couldn’t clear my ears in the chamber, I might have to have tubes put in my ears.
After reading about possible complications that could arise from tubes I decided to live with the whooshing, since I wasn’t having problems keeping my ears equalized inside the chamber, though it did take a lot of concentration to keep popping them during the pressurization and the decompressing.
The following weekend, I spent a couple of nights at a friend’s house. They treated me like a queen and fed me some amazing meals, too.
The changes in the routine did cause some of my old leg pain and achiness to flare up and I didn’t sleep as soundly as I had been recently. I never have been able to sleep well in a new place for the first few days, and this was no exception.
Sunday was another day of no treatment, but it wasn’t a terribly easy day because I didn’t rest. I went to church with my friends, then it was back to my sister-in-law’s house.
Generally, I was just tired from all the running around. I tried going without my sleeping medication, thinking that since I was exhausted, I would be able to sleep. But, no, I just tossed and turned.
Monday went smoothly and I fell right back into a routine. I did have some shooting pains running down the back of my legs. Whenever I get too tired, that is one of the things that always crops up, so I was disappointed when that started again.
I made up my mind to take my sleeping medication that night so I wouldn’t be so tired.
Later, I realized that I might have accidentally eaten some gluten. I usually don’t eat any gluten and haven’t for over 5 years. My sister-in-law had brought in some chocolate-covered strawberries for Mother’s Day. They were amazingly good, but I noticed that every time I ate one, I started aching almost immediately, which was a very good indicator that I had eaten gluten. After the 3rd time, I decided they weren’t that good and determined not to eat any more. Sure enough, I began to feel better.
Wednesday was a strange day. I felt weird and out-of-sorts all day. My thinking never really cleared and I was slightly out of step all day long. I had some trouble clearing my ear during the treatment and the technician offered to cut back the pressure if it happened again.
But, I made up my mind that I’d figure out how to keep going. I noted in my journal that I was disappointed because I’d really hoped to be feeling much better than I was at this point in the treatments.
Looking back, I think most of the problems were because I had over-done it the weekend before. I never bounce back from a big event too quickly, and that apparently wasn’t going to change.
By Thursday, I was improving. I noted that my hip didn’t hurt at all and my thinking was much clearer. I was relaxed and had made the 45-minute drive to the center without my legs hurting at all. That was a first. I was still wishing for more improvement, but I would be happy with what could get.
Friday, my journal included: “Really tired today and I hurt more than yesterday. Back of thighs, achy muscles, etc. But, the intensity of the pain is much less than it used to be and my thoughts about wanting to tackle some projects when I get home are encouraging.” For the past several years, the thought of trying new projects, like gardening and home-improvement, were so overwhelming I usually just pushed the thought away. It was easier than being discouraged about not feeling well enough to take on any more than was absolutely necessary to survive.
I also cut my Trazodone tablet in half, which meant I was only taking 1/4th of what I had been when I started treatment.
On Saturday, I woke feeling better than I had in a long, long time, which was amazing considering I had reduced the sleep medicine. I tried skipping the Trazodone that night, but that was a mistake. I ended up getting up in the wee early morning hours and taking the other half of the tablet. Needless to say, I woke up tired the next morning. Thankfully, it was Sunday and I didn’t have to do anything but rest all day.
Monday was pretty normal and overall I felt pretty good. But, after a lot of soul-searching, I decided to go back to taking a full tablet of my sleeping medication. I felt like I wasn’t sleeping as well as I should have and I wanted to make sure I got as much benefit from the treatments as possible. It was hard to let go of the idea that I could get off all of my medications, because that had been a long-term goal.
Tuesday, I wrote in my journal, “I’m finding it a lot easier to keep going strong all day and I feel much more alert. I sure hope that is permanent! Nine treatments to go!”
Wednesday and Thursday were relatively uneventful. I hurt a little and took it pretty easy. As always, the pain would go away for a few hours after treatment.
On Friday, I had a lot of energy, which was great. I noted that I could go up and down the stairs quickly and confidently without any pain in my hip or unsteadiness.
Saturday, I tried a new photobiomodulation therapy that the center offered after I finished the HBOT treatment. I had eavesdropped as the technician explained its benefits to another patient the day before. After I researched it, I decided I didn’t have anything to lose by trying it out. It was incredible!
If you’ve never heard of this treatment, basically it works like this: You lie down, completely naked except for some goggles over your eyes, in a device that looks like a tanning bed. For 15 minutes, you are bathed in a wide spectrum of light from lasers or LEDs.
I will admit it felt really strange getting completely naked in the back room where the device was. But I was all alone and the door was locked.
The theory is that the light beams will promote healing, tissue repair and reduce inflammation. All I know is that it felt amazing. The comforting heat penetrated every pore in my body and reached deep into my joints, like having a heating pad for your entire body.
It did get pretty warm by the end of the 15 minutes, but I was disappointed when the lights went out because it felt so nice.
It might have been all in my mind, but I felt absolutely amazing when I left the center that day. I was sorry that I hadn’t tried it sooner.
Current recommendations are that you can only do this therapy 3 times in a week and only for 15 minutes at a time. Any more than that can be detrimental.
I would have loved to do it every day. Unfortunately, I only had one week to go, which meant I could only do this treatment 3 more times.
The feeling of well-being lasted for the entire day. It is hard to describe but I was relaxed and energized all at the same time.
We went out for milkshakes on Saturday night, and I think I got some gluten again. I started hurting within 30 minutes of drinking the shake. That lasted until Sunday evening, which is usually about how long I react to an accidental exposure to gluten.
This would be the final week of treatments. By now, I had settled into a steady routine.
Overall, I was feeling much better, though I wasn’t anywhere near 100%. Monday was Memorial Day, which meant the center was closed.
By Monday evening, the shooting pain down the back of my thighs had returned which was disappointing, because I thought I was finished with that.
It was also troublesome because this was the first time I’d been two days in a row without treatment. I couldn’t help but wonder if the improvements I had been feeling were going to go away once I stopped having the HBOT therapy.
After going through so much, I was really worried that the improvements wouldn’t be permanent. But, I was almost finished with the series of sessions and decided that whatever happened, I was glad that I’d had the courage to give it a try.
I turned it over to God. I would trust Him for whatever His purpose was.
Tuesday and Wednesday were pretty good days despite the fact that my legs were still aching some.
I noted that my thinking was crystal clear and if nothing else improved, that made the effort worthwhile.
I had another photobiomodulation treatment on Tuesday and left feeling just as wonderful as I had on Saturday.
Thursday was a fabulous day. I had another photobiomodulation treatment and left feeling totally energized!
I felt really good the rest of the day and went shopping for most of the afternoon without getting tired. It was very encouraging to be able to go the entire day and still have some energy left over at the end of it.
Friday was another very good day. It was finally time to pack up to go home.
I wrote in my journal “I have felt so good today. I really hope this is part of true improvement. It’s wonderful to have energy and not to be hurting all the time. Even my feet don’t hurt!”
Saturday, June 1st, was a bittersweet day. I did the 40th and final HBOT treatment as well as one more photobiomodulation treatment. Then it was time to say goodbye and head west.
I spent a few days with my parents on the trip home. They both said the change in me was phenomenal. I felt very good throughout the visit and was excited to finally drive the rest of the way home. I was still feeling alert and energized.
It’s been two months since my last HBOT treatment.
It’s hard to believe, but the improvements that I began to see the final week continued. Instead of stopping when the therapy completed, there were small positive changes in my health for several more weeks.
My pain level has decreased dramatically and I continue to have much clearer thinking and lots of energy. My whooshing in my ear finally went away after about a month.
I’ve noticed that I can work longer and faster than I have in years. I still have some days that are better than others, but overall my quality of life is vastly improved.
I’m sleeping better, though I still take one Trazodone tablet at night. I also take a Meloxicam tablet almost every day, but other than that, I’m off all my prescriptions. I’ve cut back to only 3 Valerian root tablets and hope to cut that down to two soon. I still take a couple of Mucinex tablets, 2 Turmeric capsules and an Allegra for my allergies.
But considering I was on 5 prescriptions just a year ago, I count that as real progress.
I know this has been an extremely long post, but I hope it will help someone who might be thinking about trying this type of treatment.
It was hard and very expensive (about $10,000 total), not just in the cost of the therapy itself but also in travel costs, lost work hours and general wear and tear of being away from home.
But, would I do it again, you ask? In a heartbeat…
I don’t know whether the changes I’ve experienced will be permanent, but since I’m still feeling very much improved after 2 months, I’m hopeful.
I’m not and will probably will never be completely free of the fibro. But, I feel like I’ve gained back 20 years, and that’s nothing to take lightly.
I am currently setting back another $10,000 to hold in reserve in case I need to have another round of therapy in the future.
Even if I have to consider doing this every few years or so, I will definitely keep that as an option.
It made that much difference in my quality of life. And, I’m not the only one that feels that way. My husband has been extremely pleased with how much better I am. He still worries when I have a bad day, and we both wonder if I’ll go back to feeling the way I was before.
But, so far so good…
One other thing that’s been a little funny is the fact that people keep asking me if I’ve lost weight. One lady thought I’d lost 20 pounds. I laughed, thanked her and informed her that I actually gained about 10 pounds since she’d seen me. I guess I look better because I feel better.
This blog is a direct result of the improvement that I feel. I’ve owned this domain for years, but the idea of actually starting a blog seemed overwhelming.
I will continue to post updates on the long-term effects as time goes by, so stay tuned for those.
If this is a treatment that you are interested in trying, I encourage you to do your research, and work with your doctor.
After all, you owe it to yourself (and your loved ones) to do everything possible to be your very best you!
For me, it was a great thing, but it might not be so for everyone. Please don’t hesitate to drop me a comment below if you have any questions about the treatment. I look forward to hearing from you!
Until then, here’s a virtual hug! I hope you’ll drop by the Castle again very soon.
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