"Talk to your Doctor"

[RMJacobs]

@Mohan

Could you explain it to me?

I’m assuming you want me to explain the treatments? If I misunderstand, just let me know. Anyway, we can discuss this here, as other folks might chime in.

The only treatments I know about for fibromyalgia are antidepressants (more on that in a minute) and muscle relaxers. I’ve done the muscle relaxers for years, and they do help. I tried Cymbalta, an antidepressant, and boy, was that a mistake. It helped my pain levels, but the hallucinations became a problem. I had to taper off, and decided that I didn’t want to pursue trying a different one. I didn’t like how it made me feel, either–I felt like I had a smile pasted on my face, no matter how I felt. And I never cried once the whole time I was on it, even at very sad things. Normally I cry very easily, so that felt very strange.

The way I understand the reasoning behind antidepressants is that they adjust the pain receptors in the brain. Someone else here might have a better explanation.

The only other thing that has ever helped is opioids. They have so much downside that I understand why someone wouldn’t want to go that route.

My rheumatologist said I developed fibromyalgia due to the constant pain signals from my rheumatoid arthritis. I’ve had RA over 25 years and the pain never gets fully controlled, so that makes sense.

Rebecca

[Mohan]

Thank you! I know nothing about it. I just know when she says the docs are messed up they are messed up. I appreciate that overview. I am trying to find her a doctor (she knows this and is on board) so I’m trying to understand where that diagnosis came from as well as why a medical professional would chalk physical pain up to depression.

[RMJacobs]

@Scribbler

f someone had the resources, energy, and focus, my suggestion would be to do a total lifestyle overhaul including introducing gentle exercise, doing an elimination diet to look for wierd triggers and food sensitivity, and getting into counseling to talk about responding to stress and anxiety. Also getting a super healthy diet and good vitamin mineral supplement going, after you’ve looked for clear food sensitivity. But all that is hard if you feel like crap already. And it’s not guaranteed to help, because there may in fact be an actual disease process or even a retrovirus that no one has identified yet.

My rheumatologist says the brain gets rewired to cause a constant perception of pain. Believe me, it’s real, and it’s nothing to do with depression. I know you mean well, but those of us who deal with chronic pain do not appreciate being told “eat better and get more exercise.” I eat very clean and exercise every day, even if I cry for the first mile on my bike. This is a physical problem; it’s just the source of it has not yet been identified.

I am a happy, optimistic person in spite of chronic pain.

Rebecca

[RMJacobs]

@Mohan

Thank you! I know nothing about it. I just know when she says the docs are messed up they are messed up. I appreciate that overview.

Glad to help. If you have further questions, just let me know.

Rebecca

[Mohan]

Thank you so much! I really appreciate it. You are a gem.

[Calvincrowe]

I have a wonderful PCP (she’s actually a PA) in a large multi-location practice in my county. I love her, can get a response via email in a day or so, can schedule within a few days with most of my specialists and feel like I’m heard, listened to and respected. There is also a superior orthopedic group here who I’ve used for both accidents and planned surgeries. I think I’m lucky but also persistent when asking questions/having concerns. It really helps to have annual appointments for preventative care with the same people, too.

[NaturallyHappy]

I really struggle w the constant pain from cervical dystonia. A neurologist just prescribed Cymbalta; I read the side effects and said Nope!”, and after reading your post, I’m glad I did. I’m actually going to try a people bemer blanket (no, I don’t rep them). The pain is exhausting, but like you, I remain cheerful.

[Scribbler]

Yes, that’s another thing I’ve heard that some kinds of chronic pain could disrupt your pain pathways. It would be so interesting to know how often that’s the case, or if FM is actually associated with RA as another autoimmune reaction. If phantom limb pain exists in amputees then the nerves can indeed misfire in complex ways

I had a brief brush with something like chronic fatigue in my mid 20s. I had about a year where whenever my life got happy and busy, I’d get swollen lymph nodes, a spacey feeling, and a passing fever and have to slow down. It was a rough couple of years where I’d ended a college boyfriend relationship and hadn’t found a place in the adult world yet, but this condition was not helping me. My doctor didn’t take it seriously. My way out was to start taking care of myself, eating better, exercising. It faded away and never came back. But I’ve always been a get 'er done kind of person. I could totally see just a slight difference in personality how you could get stuck in that unwellness and lose a bunch of years and it could be your new normal.

I do think in retrospect it was some kind of retrovirus that just kept popping up, it always felt like I was almost catching flu but fighting it off. However it wasn’t fibromyalgia, no body pain. More like chronic fatigue syndrome. Maybe it was just mononucleosis in a very mild form. I never had mono to my knowledge but had a really nasty strep throat when I was 19.

Anyhow I wouldn’t be surprised if eventually we find different causes for FM with similar symptoms.

[fordtraktor]

I take Cymbalta (generic) for my chronic migraines. I haven’t had any negative side effects. Combined with Aimovig shots monthly, it has changed my life for the better.

It is used for things like chronic migraine and fibromyalgia because it sort of calms the pain receptors, I think. My migraines are caused by my brain neurons overfiring and these medications don’t reduce my overall emotions, just calm down the hyperactivity. But I tend not to be strongly affected by meds, and meds affect people differently.

[Scribbler]

@RMJacobs

@Scribbler

f someone had the resources, energy, and focus, my suggestion would be to do a total lifestyle overhaul including introducing gentle exercise, doing an elimination diet to look for wierd triggers and food sensitivity, and getting into counseling to talk about responding to stress and anxiety. Also getting a super healthy diet and good vitamin mineral supplement going, after you’ve looked for clear food sensitivity. But all that is hard if you feel like crap already. And it’s not guaranteed to help, because there may in fact be an actual disease process or even a retrovirus that no one has identified yet.

My rheumatologist says the brain gets rewired to cause a constant perception of pain. Believe me, it’s real, and it’s nothing to do with depression. I know you mean well, but those of us who deal with chronic pain do not appreciate being told “eat better and get more exercise.” I eat very clean and exercise every day, even if I cry for the first mile on my bike. This is a physical problem; it’s just the source of it has not yet been identified.

I am a happy, optimistic person in spite of chronic pain.

Rebecca

Well, yes. If you already have diet and exercise figured out, then my advice wasn’t aimed at you :). The link between FM and RA is really interesting. The nerves get rewired, or maybe it’s part of the autoimmune dysfunction?

All unexplained chronic body pain currently gets lumped under FM, but I’m sure there’s actually many different triggers. Just like all belly pain in horses gets called colic no matter what part of the gut or the cause

[RMJacobs]

@NaturallyHappy

I read the side effects and said Nope!”,

I refused Cymbalta for years. The side effects were bad enough; the part that really worried me was the problems people had going off of it. My rheumatologist in South Carolina pushed it the whole time I went to her (five years), but I didn’t trust her as it was. It was only when my internist gave me his arguments in favor of it that I agreed to try it. He said the problems going off of it were overstated.

Well, I was right and they were wrong. I was lucky that I had a relatively easy time going off, but it still sucked. I didn’t feel like myself for months afterwards.

So, you were smarter than I was!

Rebecca

[RMJacobs]

I’m glad it works for you! Migraines are the worst pain I’ve ever experienced. And I’ve experienced an awful lot of pain. Luckily, one of my doctors way back figured out the root cause (allergies), and now I rarely have a migraine.

Rebecca

[RMJacobs]

I’ve been a cyclist all my life. Lack of exercise was never a problem for me. I found out when RA hit me like a ton of bricks in 1997, if I didn’t exercise, I lost the ability to move.

I miss my time of doing 100 mile weekends, but I’m grateful to get on my bike every day in spite of several serious health conditions.

Rebecca

[NaturallyHappy]

@RMJacobs, I don’t think I’m smarter at all. My husband passed away years ago, and I live alone. The side effects frightened me too much. I’m a bigger chicken than you!. I’m sorry you suffer.

[RMJacobs]

Nothing wrong with being cautious! And thank you.

Rebecca

[red_mares]

I got tired of wasting time with a PCP. The only answer I ever got was “Go see so & so…” basically they were useless. I’ve also noticed that the nurses at PCP offices were really bitchy. The staff at the specialists I deal with are great. Other than that, I go to the local Doc-in-a-Box. It’s convenient, they’re reasonably pleasant, decently competent.

One of the last straws for the PCP was when I went for a pre-op physical and they discovered I had a UTI. I was given a prescription for Cipro. I got to the car after picking it up and saw the bold type warning for tendon ruptures. I had surgery scheduled in 4 days to repair tendons. WTF?

I’ve taken Cymbalta for Fibro for a little more than 3 years. I haven’t noticed a whole lot of side effects. It does take the edge off the ouch.

[Rackonteur]

They do where i live. But they are old, don’t keep up with changes, and don’t want to change their ways or their minds.

[Rackonteur]

@RMJacobs

The only treatments I know about for fibromyalgia are antidepressants (more on that in a minute) and muscle relaxers. I’ve done the muscle relaxers for years, and they do help.

Can you please say more about muscle relaxers for pain? I would like to learn about them.

@RMJacobs

The only other thing that has ever helped is opioids. They have so much downside that I understand why someone wouldn’t want to go that route.

Or someone’s doctor might refuse to prescribe them. Which IMO sucks, even though i myself am scared to try them.

[StB.YM]

@Scribbler

I had a brief brush with something like chronic fatigue in my mid 20s. I had about a year where whenever my life got happy and busy, I’d get swollen lymph nodes, a spacey feeling, and a passing fever and have to slow down. It was a rough couple of years where I’d ended a college boyfriend relationship and hadn’t found a place in the adult world yet, but this condition was not helping me. My doctor didn’t take it seriously. My way out was to start taking care of myself, eating better, exercising. It faded away and never came back. But I’ve always been a get 'er done kind of person. I could totally see just a slight difference in personality how you could get stuck in that unwellness and lose a bunch of years and it could be your new normal.

I do think in retrospect it was some kind of retrovirus that just kept popping up, it always felt like I was almost catching flu but fighting it off. However it wasn’t fibromyalgia, no body pain. More like chronic fatigue syndrome. Maybe it was just mononucleosis in a very mild form. I never had mono to my knowledge but had a really nasty strep throat when I was 19.

It might be EBV - Epstein-Barr virus. What you described sounds like it. Most of the human population has it. It tends to come out in immunocompromised individuals and if I remember correctly, can cause chronic fatigue.

[Scribbler]

Hmm went and googled that. EBV has become a lot more serious since the last time I heard about it. I’ve never had any subsequent symptoms. Interesting here it’s being implicated in Parkinson’s where other research is leading to gut health for Parkinson’s and dementia.