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rich709

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Jun 3, 2023
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DX FIBRO
Hi there,

I was diagnosed with Fibro around 2 years ago, but now knowing the symptoms, I've carried it with me for around 45 years, my earliest memories being that I used to curl up every morning after breakfast, in front of the hot air vents that heated our house from around the age of ten. I hated doing physical education at school because I was physically unable to exercise through the pain. I did dreadful at school in general, and I was both a loner and hated going out. I did go to the doctor as a child with my symptoms, but they never found anything wrong, and I don't think Fibro would have been a realistic diagnosis back then, or even a common diagnosis as a child even now. They put the pains down to "growing pains" though I don't really recall their explanation for them being very widespread, and not really contained to one area of my body. I lived with the pain, and tried to ease it through hot baths, lying in the sun (during the summer) and later, long hot showers, and trying to get as much heat as possible to my body.

Fast forward to my thirties, and I moved from the UK to Canada. I went to the doctor with these pains as they got progressively worse, and my doctor suspected arthritis. I went for x-rays and was referred to a rheumatologist. I waited over six months for an appointment, and on the day of my appointment, it was a beautiful hot summers day. I had no significant pain. the doctor looked at the x-rays and did some diagnostic testing, and came to the conclusion that I did not have any sign of arthritis. That was the end of it. There was no further follow ups, no other possibilities, and I lived with the pain.

Fast forward to my early fifties, and I got shingles. The shingles themselves weren't too bad, but the migraine that came with it, and to a lesser extent, the postherpetic pain caused me some significant pain problems, for which I was prescribed Lyrica. I started on a low dose, and increased gradually, since it wasn't really getting rid of my pain. Once I was on around 300mg of Lyrica per day, my life changed. All the pain throughout my body, the pain that I had lived with since the start of my teen years just disappeared. For the first time IN MY LIFE, I actively sought exercise, jogging, then running, and cycling. My endurance was still pretty low, but I was doing something I had never done before. It was incredible. I lost around 30 pounds in weight and felt better than I can ever remember.

A few months later, my doctor suggested I try to come off the Lyrica (which, remember, I was only taking for shingles), and so gradually, I reduced the dose until I was no longer taking it. Within a month or so, the pain that I've lived with for most of my life came back, and I was suddenly no longer able to run, or even jog, and my cycling all but stopped. It was near the end of the biking season here anyway, so I didn't think a whole lot of it. I went through winter with a struggle, and then went back to my doctor. I was kind of embarrassed to say that I wanted my pain pills, but I told her my experience, and told her about my history, and my thinking that I had arthritis. She put the connection together that Lyrica would have no real effect for arthritis, and said it sounded more like I had Fibro. She sent me for more x-rays just to rule out arthritis again, and did some pressure tests, and diagnosed me there and then. I started back on Lyrica and worked back up to my previous dose. It seemed to work well for a year or so, but then it didn't reallly help much. I also felt that I'd developed some side-effects (blurry vision and poor concentration), though I couldn't say either one was certainly caused by the Lyrica. The doctor suggested that they probably were side-effects, and suggested that instead of increasing the dose, we try something else. I gradually came back off Lyrica and tried Amitriptyline. It did nothing for me at all, and I said that I'd rather put up with a bit of pain, and maybe slightly blurry vision/poor concentration on Lyrica than taking Amiltriptyline.

Taking Lyrica was hiding a shoulder injury that didn't heal - I put the only symptoms I had at the time (sun burn feeling in the arm) down to FM. When I stopped the Lyrica, the shoulder injury made itself very known, and I started physiotherapy. Apparently that was hiding a torn rotator cuff which became very evident when the shoulder injury was no longer a problem. I started Lyrica again on a lower dose at the same time as starting the physio. And that's where I am now. Lyrica on a lower dose that's really not doing anything for me. I wake up in significant pain every night in my legs and both my arms, but I'm reluctant to change to another medication, until the rotator cuff injury is mostly fixed. At that point, I will be going back to the doctor to see what else I can try.

I must say, my current doctor is fantastic, very supportive, and does everything she can to ensure she's as well informed on the current state of FM as she can.
 
Hi Rich, and welcome to the forum. I hope you find this place informative and helpful to you. We are here to support each other.
 
Wow, what a journey, Rich! Sounds like you've got a lot more understanding (your docs and your own) and a little control at last. Welcome!
Amitriptyline. It did nothing for me at all
Yeah, so switching at least helped see what was what and wasn't too long term I hope? I got 8 side effects from 4 months of amitriptyline and it took I think 2 years to lose the 6kg weight gain, the other 7 stopped fairly straight away. It only zombified me which seemed good for sleep, but wasn't.
Have you considered the other meds, like gabapentin/Neurontin is similar?
And what about all the many supps?
Taking Lyrica was hiding a shoulder injury that didn't heal
This is my misgivings with all pain suppression - apart from not tolerating the meds anyway.
For local pains, analyzing and learning to alleviate and prevent (stretches, acupressure, massager..) has brings them down to zero. However the pain / feverishness / nausea / Ache from overdoing it couldn't all be got under control my meds, and would make me forget not to overdo it, which used to be bad enough anyway.
Would you say the limb pain at night is local (e.g. tendons) or overall (e.g. muscular)? Have you been able to identify the triggers?
 
Wow, what a journey, Rich! Sounds like you've got a lot more understanding (your docs and your own) and a little control at last. Welcome!

Yeah, so switching at least helped see what was what and wasn't too long term I hope? I got 8 side effects from 4 months of amitriptyline and it took I think 2 years to lose the 6kg weight gain, the other 7 stopped fairly straight away. It only zombified me which seemed good for sleep, but wasn't.
Have you considered the other meds, like gabapentin/Neurontin is similar?
And what about all the many supps?

Yeah, as I said, I want to wait until my arm is mostly healed, so that anything that I'm taking, is not masking something that hasn't healed. Once I'm in a better position with that, I will be going back to the doctor to see what else we can try.

This is my misgivings with all pain suppression - apart from not tolerating the meds anyway.
For local pains, analyzing and learning to alleviate and prevent (stretches, acupressure, massager..) has brings them down to zero. However the pain / feverishness / nausea / Ache from overdoing it couldn't all be got under control my meds, and would make me forget not to overdo it, which used to be bad enough anyway.
Would you say the limb pain at night is local (e.g. tendons) or overall (e.g. muscular)? Have you been able to identify the triggers?

I am aware of some dietary things that make things worse for me (sugar, bread, fatty foods), and I do try my best to avoid them. I have a very sweet tooth, but am aware of the effect of sugar, and avoid 100% soft drinks, and avoid as much as possible without making life completely miserable, chocolate and candy. Fruit doesn't impact me the way other sugars do, so I guess its probably processed sugars that are bad. I like fruit and try to substitute any sweet thing I would traditionally go for, with a piece of fruit (banana, apple or orange)

The limb pain at night... hard to say. All of these pains feel the same as the rotator cuff pain (ie, tendons), but I feel that the leg pain may be sciatica, and I have no idea what the wrist/arm pain is other than the obvious rotator cuff injury itself. My arm injury is at the top of my arm, close to my shoulder, and yet, this night pain goes all the way from my shoulder down to my fingers. The injury is also only on my right arm, whereas this night pain is in both arms.

I have exercises to do between physio appointments, which I AM actually doing, but I don't do anything else. I was hoping to try acupuncture, but I think I will use all my insurance allowance for this segment on physiotherapy (physio and acupuncture are grouped for spending allowances on my policy). When I first went to physiotherapy for the shoulder injury, the physiotherapist tried some acupuncture (just a few needles). He did it twice, and on the second time, I had this really interesting sensation of pain relief and relaxation in much of my body that I really wasn't expecting. I haven't looked into how acupuncture works, but I'd definitely like to try it on a more extensive basis... just don't think I'll be able to afford it this year. I've never looked into acupressure. I'm guessing this is something you can do, to some extent at least, on yourself?
 
I am aware of some dietary things that make things worse for me (sugar, bread, fatty foods), and I do try my best to avoid them.
If you can manage to cut these things entirely from your diet at least for a trial period of one month you may find that you can make a big difference in your pain. It's worth a try. Even eating small amounts of these things can make things a lot worse.

as much as possible without making life completely miserable,
You might want to compare the misery of going without candy to the misery of fibro pain. i have gone completely off sugar for an entire year (nothing that even contained sugar in the smallest amount, which meant reading the labels on everything) and after that anything with sugar in it was sickeningly sweet to me. I am strongly considering doing it again, and this time staying that way.
I have exercises to do between physio appointments, which I AM actually doing, but I don't do anything else.
It's very important to exercise in some form. doesn't matter what, but you have to keep moving your body. If you don't, it is almost guaranteed to make things worse for you. Even a small amount of daily exercise can make a big difference if you stick with it. Walking is great, and it gets you outdoors which is also very helpful for most people.

Read this, it has some suggestions.
 
and avoid as much as possible without making life completely miserable, chocolate and candy. Fruit doesn't
I do understand - trying to get my appetite back properly I've been eating (healthy) stuff again that will cause severe problems for me long term (e.g. lipids) as well as some short term (e.g. sinus burning / headaches, esophagus blocks...). Even knowing they harm couldn't stop me first. And my wife isn't fully aware of the connections, so encourages me to eat more varied than I should - and of course variation would be good, if a whole banana didn't cause a 5 hour headache as well as increase my lipids too much. So knowing some connection, I enjoyed the spree (for 15 minutes) and suffered (for hours), so learnt my lesson, and tried to teach my lesson to my wife too. It's of course much harder if we don't know the connections. But like sunkacola said it's generally very much worth it to reduce symptoms. To do so, I only have <50 foods. For chocolate I've switched to very dark chocolate, more than I should, but that I allow myself.
The problem is that many things we use to comfort ourselves (often addictively) are causing the discomfort in the first place.
The limb pain at night... hard to say. All of these pains feel the same as the rotator cuff pain (ie, tendons), but I feel that the leg pain may be sciatica, and I have no idea what the wrist/arm pain is other than the obvious rotator cuff injury itself. My arm injury is at the top of my arm, close to my shoulder, and yet, this night pain goes all the way from my shoulder down to my fingers. The injury is also only on my right arm, whereas this night pain is in both arms.
All of them sound like good candidates for physio (e.g. via youtube).
I have exercises to do between physio appointments, which I AM actually doing, but I don't do anything else.
That's good. Sometimes we need to keep on with them patiently, but often I've found if I don't get pretty quick partial release inside of minutes, hours, a day, they are not quite right or not enough. So it's good to be on the search and vary a little - type, "dose", time of the day...
how acupuncture works, but I'd definitely like to try it on a more extensive basis... just don't think I'll be able to
So I s'pose it'd be good to get independent of your physio sessions as soon as you find you know how to treat yourself and then switch over to acupuncture, at least for awhile...
never looked into acupressure. I'm guessing this is something you can do, to some extent at least, on yourself?
Yep, again for self(-applied) acupressure there are lots of good videos for each symptom type. Even things like having gotten short-breathed, that works brilliantly for me, really, like claimed, inside of 30 seconds. Probably vagal nerve influence I guess.
 
It's very important to exercise in some form. doesn't matter what, but you have to keep moving your body. If you don't, it is almost guaranteed to make things worse for you. Even a small amount of daily exercise can make a big difference if you stick with it. Walking is great, and it gets you outdoors which is also very helpful for most people.
When I said "I don't do anything else", I mean that I don't do anything else specifically to alleviate the pain. I do get plenty of exercise. I walk my dog twice a day, regardless of weather, for between 20 and 40 minutes a time, and my job is pretty active. On a really light weekend day, I might only get in 7-8,000 steps. On a normal work day I'll be between 10-15,000 steps, and on a really busy one, I can be 20,000+. Much of my work based exercise is done carrying around 25-30lb of gear on my back. I will be cycling again as soon as the weather permits (it was 4° C today... we're not there yet!). Cycling weather here is pretty unpredictable. It's cold, rainy and always windy. But I do enjoy cycling when the weather is mild.

If you can manage to cut these things entirely from your diet at least for a trial period of one month you may find that you can make a big difference in your pain. It's worth a try. Even eating small amounts of these things can make things a lot worse.
You might want to compare the misery of going without candy to the misery of fibro pain. i have gone completely off sugar for an entire year (nothing that even contained sugar in the smallest amount, which meant reading the labels on everything) and after that anything with sugar in it was sickeningly sweet to me. I am strongly considering doing it again, and this time staying that way.

I don't find sugar to be a long term problem for me. It's a short term problem. I see it the same way as youngsters do with alcohol on a Friday night. They know they'll wake up on Saturday with a wicked hangover, but they do it anyway. Most don't do it every day. Same for me and sugar - I avoid it in my daily diet, but I might have a treat, knowing what the consequences will be for a couple of hours. The effect is so noticeable, that I know its a pretty short-lived problem, and I can do it from time to time. My wife is a diabetic, and so sugar is not in our daily meals in any amount. Most of the sugar I get is from candy and that's very occasional. Now alcohol I do avoid. It makes me feel terrible in very small quantities.
 
I don't find sugar to be a long term problem for me.
"Occasional treat" sounds good and well assessable to me.

(So not for you, just cause I came across this a minute ago: Ari Whitten saying caffeine and sugar is "borrowing energy from tomorrow to pay for today". Not saying or thinking it's right for everyone, but this has shown itself to be true for me even for treatments like D-ribose and Chinese acupuncture, also for when I get a histamine/cortisol flash.)
 
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