My name is Elana and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Living with Fibromyalgia! We’re happy to have you join the community. It sounds like things have been very difficult for you lately. I’m sorry you have had to go through so much. I hope you will be able to find some relief from engaging with this community. Using the site can be a little confusing at first, so I wanted to give a few suggestions to help you start. The search bar (the magnifying glass icon in the top right corner) is pretty helpful for looking through past discussion topics. If you have specific questions or want to share your experiences, feel free to start your own discussion post by using the “+ New Topic” button. This is a very supportive community, so I hope you will be able to feel comfortable here. Please feel free to reach out if you have any questions.
Thank you for the welcome . I have had fibro for 20 plus years and have found that just when I think things are stable a new symptom will pop up.
I have stopped the antidepressants due to the uncontrollable muscle movements and spasms I have. Still present but less. This and the pain are really awful. Anyone going through this ?
Hi, Ginger80.
I’m sorry that the meds are causing you bad side-effects. A pharmacist I know once said something that sticks with me - Sometimes the drug’s side-effect can be worse than the symptom you are treating.
I’m on several meds for the fibro, but it took a long time to get here, and I still have times that the pain seems unbearable. Many of the meds I tried were not compatible at all with my body. I was finally able to take one NSAID drug, but, only if I also added Pepcid AC to the Aciphex I already take for my stomach.
I did read a post recently where someone is experiencing uncontrollable muscle movements. Hopefully, they will see your post and answer. Or, you might try posting your own topic about it, and get more replies that way. Hang in there, Ginger80! If you have been fighting this for 20 years, I’ve no doubt you can continue to find the answers that you need to combat this awful illness.
LOL - almost all drug’s side-effects were worse for me than the fibro-symptoms (and also a lot of other diseases) I tried to treat with them… so I really have had no other choice than to look beyond med and become and starting to be an expert at that…
You know, I do believe that some people’s bodies just won’t tolerate meds, especially on an ongoing basis. Or, they have experienced so many awful side effects that it just isn’t worth trying more meds. That really sucks, JayCS. But, it is super commendable that you are finding other ways to combat your conditions!
I have this problem with all medication. I take Nortriptyline which is an antidepressant drug. This is supposed to block the nerve sells so I do not feel so much pain waiting for that to happen after 9 years taking it, but I could be much worse if I do not take it. My doctor said he is unable to help me with fibro because I just cannot tolerate medication apart from the above. At least living on my own no one sees the difficulties I have!
Well, if he was good, he’d by prescribing offer you 10 different types of physiotherapy incl. cold therapy, osteopathy, and also be giving you ideas how to ‘heal’ or alleviate them yourself…
If he can’t help, you need a new doc, I spose…
Oh my goodness, Rosebud74!
You’ve been waiting 9 yrs for your medication to work?! But, as you say, I do understand some days thinking “Are my meds working?” But, my body does tell me when it is time to take my meds, if I lose track, and I do know that the pain would be much worse without them.
Has your doctor considered treating you with nerve blocks or other types of injections? I have a wonderful pain management doctor, who is an anesthesiologist. He gives me nerve blocks, and also steroid injections, but he knows that too much of the steroid will cause me to break out in hives, so somehow adjusts his solution where I have no side effects. I thank God for leading me to him.
You know, they’ve probably come up with a lot of meds in the last 9 yrs that might not be as hard on your body, or other ways to combat your pain, as JayCS has suggested. I believe that we will learn a lot from JayCS, here on the site, regarding alternative ways to feel better.
Hang in there, Rosebud74!!!
Rosebud74, I’m sorry that I mentioned injections - They probably won’t help you with the fibro - I mainly have them for my arthritis. I do get a little ahead of myself sometimes - My bad.
9 years, wow I overread that! (If I now understand you correctly.) I waited 2 months for herbs and only occasionally gave them a longer chance, and most chemicals should work in under a week… (and the docs always said that too) I usually don’t last that long, because of the adverse side-effects I almost always get. What didn’t hurt me was diclo, gave that 10 days, that was it.
Thank you for replying to me. In 2012 I went to a pain clinic and they gave me exercises to do. I suppose to do them 3-times a day but I try to do them at least once a day if I am not too tired. I must admit they do help a bit but then after doing them I’m exhausted! The Nortriptyline tablets I take although they do not do much for the pain but they do give me sleep at nights.
rosebud - can you shorten them until you are not exhausted? Besides my back exercises 8mins. every morning, I’ve found additional yoga back exercises and hand/arm exercises helpful to me, which I spread over the whole day, but only do about 20 secs. in one go, especially the arm ones.
Do you do them longer than 20 secs.? Pain docs don’t really know fibro, I think. One of my mine told me to do yin yoga, that meant holding stretching positions for 3 minutes! - I could scream! But if I do some stretching exercises for 20 secs they have a positive effect, without the negative one…
I agree, JayCS! The PT therapists treated my arthritis without considering the extra pain the FMS is causing. One actually said to me, “Come on, what are you a weakling?” (Trying to get me to exercise that muscle longer). Although, I wasn’t crazy about that therapist, he did tell me something valuable that none of the others would. I kept seeing “Abnormal posture” showing up on my insurance paperwork, and it made me feel like a freak. I didn’t tell them this, but he did mention, in one session, that the hardware in my neck could cause my head to jut forward. Since that time, I’ve worked on pulling my neck back. This likely caused the terrible chest spasms that then lead to an ekg, etc…(Also having high blood pressure and headaches, at the time, so better to be careful about these things.) It really NEVER ends until we die - Does it??? Not trying to be morbid here- sorry.
Hi, Rosebud74.
One of the meds I take is Amitriptyline, which I believe is related to your Nortriptyline med. I also take this at night, to help me get to sleep.
I commend you and JayCS for exercising - You guys are inspiring me to DO BETTER!
Lately, I do my jaw exercises (for bruxism) and squeeze a ball to help build muscle in hands and arms (I have lost the cartilage in my wrist (one reason piano became too painful). I do stretching exercises, but must get on with the things I was taught in PT to strengthen my shoulders & back. I just seem to be too tired at the end of my workday…
PS: I do want to make it clear that I fought to stay at the piano, even having joint replacements in both of my thumbs, but finally I had to say NO to more hand surgeries. It was all just becoming too much.
Thank you JayCS for the helpful suggestion about doing the exercise for a short period. At the moment I tend to do the lot nearly all at once, which is a bit daft. I have lying down, sitting down and standing exercises to do. So I’ll give your suggestion a go.
I’m becoming more and more flexible here: At a checkout I do a standing exercise or 3, sitting talking the sitting ones, and when I need a break anyway the ones lying down. But I’ve also managed to adapt all the lying down ones to standing ones for when I’m out and about, but need something, e.g. for the lower back, which shows me all positions are interchangeable. To get them effective I just have to twist my body a bit more than lying down. I always thought it was rigid, but the more exercises I get to know, I realize it’s getting to know what your body needs and adapting things, doing them short, but quickly as soon as you can.
Now without working I’ve got all day to think about and do everything. But when I first got my bad back pains in my twenties I realized that if I don’t do my exercises before getting up, i.e. first thing, in bed, then I will most likely forget them, which I realized every time was fatal, because the next 2 days were murderous. So for decades I’ve been doing them before I do anything else. Now I’m watching my body much more closely. Neglect gets back at me very quickly. The usual back exercises still have to come first and the newer yoga ones follow in the necessary breaks later on in the day…
SO disciplined!!! I want to be like you when I grow up, JayCS!
Seriously, though, I bet doing the exercises first thing either helps that morning FMS body stiffness, or it really hurts! I don’t think I could exercise first thing if I was having a flare. Honestly don’t know if I could do it, anyway -I’m NOT a morning person! I’m pretty sure that Meds & Caffeine would come first… But, as always, you’ve given me something to consider!
Oh dear, I’ll be having to give you the many examples of not self-caring enough, to revise that impression… Like going thru my mails and forums this morning without having eaten anything yet, not even drinking… OK: I can do that now, thanks for the benchmark ;-). (My wife’d have a whole list of things - but on the whole I think I am doing OK, growing up bit by bit…)
Praps, as ever, baby steps is the answer to trying exercises in bed… I usually don’t open my eyes and just start the first exercise slowly and somehow it evolves from there, one baby step at a time. It does help the stiffness, usually makes the pains slightly better, if I keep each exercise short it doesn’t exhaust that much, and it doesn’t make the Ache worse. If it did I’d try a round of the breath-hold exercise first…
Like going thru my mails and forums this morning without having eaten anything yet, not even drinking… OK: I can do that now, thanks for the benchmark ;-). (My wife’d have a whole list of things