My exciting and long story with fibromyalgia! I hope this is going to be inspirational for many of you!

[SacrificedPawn]

Hello everybody. Today when I was walking to my home from work, I just thought why I dont look for a forum where people with fibromyalgia meet and share their experiences. I actually would like to share my long story in order to help some people as spending a lot of money on doctors did not help me at all!

I was born in 1993, I am male and working as software engineer. I have been suffering from chronic pain since my childhood. In early ages, I did not pay so much attention on these mild symptoms. But my life has changed in 2018 (in a bad way though)!


(To Be Continued) (This is going to be real long.)

 

[sunkacola]

Greetings, @SacrificedPawn , and welcome. Long stories are fine, we will be interested to read it.

Just one thing.....many of us have a hard time reading large blocks of text, so please put lots of paragraph breaks in your story for us, to make it easier to read.

Most of us here have not found much help from going to a lot of doctors, either.

 

[SweetWithSour]

Welcome @SacrificedPawn

I think it is great to share your story and for all of us to know we are not alone.

We all share many similarities, but have all walked our unique and own journey. I found in sharing my story, I have helped myself heal and have formed great friendships and an amazing support system. I'm greatful for this forum of people who understand and help me know I too am not alone.

I'm looking forward to hearing more about your journey and the fantastic conversations we all will have. I hope you too may gain some value from this incredible group of amazing strong warriors.

 

[SacrificedPawn]

Here we go with 1st part. I was planning to edit my first message however, apparently this forum doesn't allow us to edit our messages ?

Mild symptoms in teenage:

I always have been a person who spends almost his whole time on computer. And you know such motionless living style just makes symptoms of fibromyalgia worse. In my teen ages, I used to experience very mild pains especially at times I don’t go school or outside, and stay at home for a few weeks. Also sleep disturbances caused by these mild symptoms. And another recognizable issue was erectile dysfunction which only appears with pains and then once I turn back to active life all use to disappear.

A Decision in 2018 almost ruined my life: “Workout”:

2018 was the year I graduated from university and it was time to change my miserable life style. Even though I was 1.80 cm tall, I was like only 58-60 kg. Everyone around me used to tell me I am too thin, I should gain weight. However, when I gain weight only my belly gets bigger and my arms and legs still stays thin. So, gaining weight just makes me uglier. Apparently, the solution was to work out! Even though I tried to make some muscles by working out during my university studies, it didn’t work well. But this time I was decisive. I had to make my weak body to seem muscular and strong therefore, I could lose my virginity after age of 25! I started working out, real hard. Also, by using some supplements: WHEY powder and creatine but nothing dangerous like steroids or hormones. And also, I just minimized, consumption of sugar and fat too. Basically, I started consuming almost only protein in order the have a muscular body! What a mistake. In very short time like 2-3 months, I was able to achieve 15 pull-ups and more than 30 push-ups. I was strong enough; my body was like stone but still my body was not appearing so muscular I believe due to fibromyalgia. And then first symptom came out.

Numbness with my left leg. Then I saw doctor first time in 2018. He recommended me to stop workout, not to walk a lot but also not to stay completely motionless. Prescribed me gabapentin (No never use this unless you really have to.), B12 vitamin even though b12 level in my blood was above the highest recommended level. As gabapentin just blocks your brain to feel pain, it worked but I didn’t see any benefit of b12 in the beginning.

I have seen many doctors:

So, after the first symptom, numbness with my left leg, severity of the symptom has increased over time. It turned into pain, and started spreading to all other muscles. Then I started seeing many and many different doctors. Many blood tests as well as infection tests, auto-immune tests are made, MRIs are taken, EMGs are done. Nothing has diagnosed until today. Only one thing out of limits in my blood is B12 vitamin (As you may know it is used for repair of damaged nerves). It is normally around 10-20 percent above of the limit. According to most reputable doctor I seen, %20 difference is just nothing and he even says that although currently b12 level in my blood is higher than test machine can measure , I still can use b12 tablets to relieve my pain, maybe not everyday but 1 tablet every 2 days.

During the whole these processes, there were times that severity of pain was unbearable. I had to take several pregabalin and gabapentin tablets in order to reduce the pain. I even was unable to sleep!

I tried every possible medication in the market:
Anticonvulsants: pregabalin, gabapentin Anti-depressants: duloxetine, amitriptyline, opipramol, bupropion, imipramine, (probably more which I don’t remember now) Muscle Relaxants: thiocolchicoside, tizanidine, cyclobenzaprine, methocarbamol, baclofen

From end of 2018 to beginning of 2023, I expected so much from medicines. Because many of them really stops the pain. However, ability of medicine prevents you to feel pain also doesn’t mean that medicine heals you!

You know reason of pain (at least for me) is an indication of damaged tissue and nerves. For recovery of the damaged area, the area must be treated well. What I mean is, i.e. if you have pain with your right shoulder, you should stop sleeping on your right shoulder, because sleeping on your right will harm that area more and increase your pain. In this way, when you use a medication which just blocks the pain, doesn’t heal you just like pregabalin, gabapentin, it just causes you to sleep on your right side (even if you try to not sleep on your right side, you may (I mean I do) turn to right side while sleeping). I just experienced very similar thing when I accepted having done ‘local anesthetic’ to my right shoulder.

Using pregabalin and gabapentin started causing new side-affects. Even if once I couldn’t convince an arrogant doctor, pregabalin causes my bronchitis to exacerbate. Both pregabalin, gabapentin had very negative impact on my gum. My gum turned in to white, swelled out with pain. I believe if I didn’t stop using these, I would have lost many of my teeth.

When it comes to anti-depressants, I tried all of them above. Anti-depressants increase some hormones like dopamine or derivates of it and these hormones just enhances the nerve conduction. However, it again does not heal your damaged tissues or nerves. The relief that anti-depressant gives is just temporary and they just cause excessive side-affects. Such as decreased sex drive, sleepiness, dizziness etc. When I left all of anti-depressants I just realized that my work-performance has enhanced drastically (saying this as software engineer).

I again tried every possible muscle relaxant in the market. I got very minor benefit of them excluding baclofen. Baclofen helped much more than others and this is the only medication that I still use. I take one tablet irregularly. Daily use of it causes erectile dysfunction too.

As a result, don’t use any kind of medicine that just blocks the pain such as pregabalin, gabapentin, local anesthetics, and probably opioids too. Don’t use anti-depressants for reducing pain unless you need them for psychological issues.

I am not doctor, all of recommendation above belongs to my personal observations. However, I would like to say one thing: A lot of times, when I told doctors what medicines I tried, and when I asked ‘what do you think of that medicine’ most of them looked at me like “what the f** is that medicine, I am doctor and don’t know it”. Even last doctor I have seen modestly said that ‘how you know so many medicines…’

Alternative Therapies such as Ozone, Acupuncture
(To Be Continued)

Supplements are better than medicines but not all
Collagen, Alpha-lipoic acid, B12-cobalamin, B9-folic acid, Omega-3, Co-enzyme Q10,
L-Carnitine, SAME, 5-HTP, Melatonin

(To Be Continued)

 

[sunkacola]

apparently this forum doesn't allow us to edit our messages ?

You will be able to edit your posts once you have been a member long enough to have posted a certain number of times.

 

[SacrificedPawn]

Alternative Therapies such as Ozone, Acupuncture

I had acupuncture and ozone therapies done too. Benefit I got from acupuncture was very slight.

On the other hand, ozone was nice. I got 2 kind of ozone. 1st one was named major ozone. My blood is taken into a tube, ozone gas is injected into tube and then blood is given back to me. I somewhat got benefit from this. However 2nd one which is actually easier to apply was much more effective. Injection of pure ozone into muscle, basically to do area with pain. That injections reduced my muscle stiffness drastically. Nevertheless, you know fibro is permanent, and solutions are temporary


Supplements are better than medicines but not all
Collagen, Alpha-lipoic acid, B12-cobalamin, B9-folic acid, Omega-3, Co-enzyme Q10,
L-Carnitine, SAME, 5-HTP, Melatonin

(To Be Continued)

 

[Sueb24]

Interesting posts Sacrificed Prawn. I was started on B12 injections back in the 1990’s when I was diagnosed with R.A. and M.E. I’ve been on them ever since until my doctor stopped them in January this year because apparently the guidelines had changed and my levels indicated no deficiency. Mid February I had a severe fibro flare, which is still ongoing, but I put it down to overdoing it when also suffering a sinus infection. Last week I had a blood test and my B12 levels were fine but I asked, and got, a B12 injection anyway. It has made no difference as yet.

 

[SacrificedPawn]

Interesting posts Sacrificed Prawn. I was started on B12 injections back in the 1990’s when I was diagnosed with R.A. and M.E. I’ve been on them ever since until my doctor stopped them in January this year because apparently the guidelines had changed and my levels indicated no deficiency. Mid February I had a severe fibro flare, which is still ongoing, but I put it down to overdoing it when also suffering a sinus infection. Last week I had a blood test and my B12 levels were fine but I asked, and got, a B12 injection anyway. It has made no difference as yet.

In the body B12, especially when it is taken with B1 and B6, it is used for nerve repair.
If your pain doesn't have any concern with nerve damage, then it is less likely you will get benefit from b12.
When I was prescribed B12 in 2018, I had no benefit of it. But currently, I take B12,B6,B1 (benexol) tablets even though b12 value in my blood is above 2000, which is the maximum value that blood tester machine can measure, I still do get benefit of it. When I skip the tablet for 2-3 days, I just feel increment in my pains.

 

[SacrificedPawn]

Supplements are better than medicines but not all:

First of all, I would like to express and ensure you that all of information I will give below depends to my own elaborative tests and tries. Still all of results could be person specific.

B12-cobalamin (Benexol B1, B6, B12) vitamin was the first non-medicine ingredient I was prescribed right in the beginning of my pain symptoms. At that time, my body with muscles as hard as rock did not get any benefit of the vitamin B12. After 4 years have passed, at the time gabapentin started not working as good as it used to, B12 started working! I remember several times B12 tablets stopped my pain upon I took it. At the moment, B12 level in my blood is above 2000, which is the maximum value that blood tester machine can measure (which means it is extremely high), I still do get benefit of it and a very reputable doctor told me that I can take 1 tablet of it every 2 days so it won’t be big deal for my kidneys.

B9-folic acid is a vitamin takes role in cell reproduction processes. When I decided to try this initially, I took it standalone so I could realize its effect. When I had pain (such a pain that comes from tiredness) with my leg, I tried B9 tablet, besides it alleviated my pain it even enhanced my erection. After on, I take B9 with B12.

Alpha-lipoic acid is a supplement which is known as strongest anti-oxidant. It helps body to get rid of harmful radicals (some chemicals) which are produced as result of nerve repair processes. A doctor recommended this supplement to me. As It is not medication, just a supplement, I didn’t expect much but still I just gave it a try. And result was surprising. I clearly get an immense benefit from alpha-lipoic acid. I take around 1200 mg divided into 3 dose per day. Alpha lipoic acid even increases amount of my urination which might be a signal of it really work in terms of detracting harmful chemicals from my body. Lastly, it is said that brand of it is important as cheap ones are not so effective. I do use cheap ones I might consider changing to more expensive ones once I get rich.

Co-enzyme Q10 is supplement that helps energy production process in the body. It is said that especially it may be more beneficial for older people as when human gets older, natural production of Co-enzyme Q10 is reduced. Just like B9 vitamin, I tested that supplement stand alone too. It clearly alleviated my pain in my leg which was caused by tiredness.

Collagen is a form of protein which gives flexibility property to muscles. As fibro-myalgia consist of muscle strain issue, collagen may help strained muscle to gain its flexibility again. When I tried collagen first time, I took little dose just like 1 gram per day. It was one of expensive brands. When I took the collagen table prior to sleep, during sleep the collagen caused me to sweet and slight relaxation in the morning. That sweeting side effect happened almost each time I took it. I just think, my body really needed collagen therefore, collagen triggered some metabolic reactions and caused me to sweet during sleep. Currently, I switched to cheaper ones in the form of powder, I take higher dose but not every day. When I consume 5 to 10 grams of collagen, I gain 2-3 kilograms temporarily and then just in 2-3 days, I drop back. I don’t know exact reason of that temporary weight gain. Collagen might be causing some water retention.

Omega-3: You know either you are sick or not, fish sourced omega-3 supplement is always recommended. I can’t say I get significant noticeable benefit of Omega-3 supplements but I still do take multiple of them. I daily take Orzax fish oil as it has got high amount of EPA, DHA and Krill oil. Krill oil is made of another sea animal not fish. And as they are more expensive, I don’t take daily, but every a few days: Solgar’s cod liver oil, and a local brand VeNatura’s omega-3 supplement that consist of ‘phosphatidylserine’ which is known as beneficial for nerve repair processes.

L-Carnitine is an expensive supplement and known as muscle metabolism regulatory. The doctor who recommended me alpha lipoic acid, recommended l-carnitine too. However, I just can say that I did get NO benefit from this one at all

SAME: As far as I know this is supplement form of anti-depressants. Again, I did not get any benefit of it. It just was like placebo, I felt nothing after using this.

Melatonin is natural sleep hormone that human body produces. If you have got difficulty with falling asleep, this can be beneficial. It really helps me to fall asleep. On the other hand, when I consume high dose of it, just like 3 mg (not actually high) it causes me to get into very deep sleep and during such sleep period, if I am lying on part of my body which has got pain, the pain in that part just gets worse, so use it precaution. Start with low dose like 1 mg.

5-HTP: Just very similar to melatonin. Some brands even put both of them into same tablets. Additional to melatonin, this one has got negative effect on erection.



Besides, all of these I must have tried more supplements. I actually remember some more. But also, some of them are for different purposes such as enhancing erection.

If you have got any kind of question, feel free to ask. I just hope I could help somebody as I didn’t find much help from doctors and made my own way!