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Thread: Anyone have fibromyalgia?

  1. #1
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    Default Anyone have fibromyalgia?

    Hello
    I have suffered from migraines and get aching legs at night and sore aching legs in general and arms, muscles for a while now. Period pains have become bad too over last few months and when I wake up I feel very tired and unrefreshed and stiff. Also suffer from gas and bloating and the runs etc. Suffer from worry and stress too, and I feel shattered all the time. Had blood tests at docs and everything was normal, healthy. I looked my symptoms up online and read about fibromyalgia. Does anyone have this? If yes what are your symptoms? I have felt my symptoms have got worse since starting my own gardening business and putting my cat to sleep( I loved my cat like he was my child). I have an impinged rotator cuff and have had upper back pain for years, I also get pains running down my legs from my buttocks. Sometimes when I get home from work I can barely climb my stairs as my legs feel like lead. I feel I am slowly falling apart. I am really struggling with doing my gardens too, they are becoming harder and harder and I spend every weekend shattered unable to do anything and ask my husband to help me do things now.
    Any info on this condition would be great
    Thanks
    Last edited by Spain; 09-24-2016 at 09:15 PM.

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    Anyone have fibromyalgia?
  3. Yes I have it. My pains are mostly in my legs and feet. Terrible like nerve pain radiating down my legs. I also have have hand and arm pain. I have those pressure points, mostly one on my elbow and one on my knee. like inside of the knee it is very tender. Im also exhausted and don't sleep. I get the restless legs all night. You sound like me with the legs- they feel so heavy like i can't climb stairs. My feet have the worse pain- they stiffen completely up like I can't walk. Some of my tests for ANA came out positive but then they changed the test and I'm now negative. WHich is really weird that the original ANA test showed abnormality. When I was in college based on that a dermotologist said I had lupus. One doctor called it Mixed connective Tissue disease but the next doctor said Firbomyalgia. You should go to a rheumatologist and describe the pain.

  4. #3
    I think I have Fibromyalgia. I have not been diagnosed officially. I have a hard time sleeping and when I wake up on most says, I feel groggy and achy. I feel like my whole body hurts most of the time. It hurts differently in different places. My wrists feel like someone is pressing really hard on them. My shoulders and neck feel achy. My legs hurt really bad at night time. I also have really bad migraines.
    I also feel depressed off and on and anxiety. I don't take much medication. I take Tramadol from the neurologist sometimes and Fioricet helps too.
    I have noticed when I exercise everyday I feel better mentally and physically.

  5. What is Floricet? Why does the nuerologist give tramadol? Does that help migraines? I find too much gives me a headache. I tried Cymbalta and Lyrica but it didn't help. These symptoms are so vague. I do have arthritis too. My fingers have huge swollen balls at the knuckles. Feels like someone hit them with a hammer. I do exercise about 9-10 hours a week. Sometimes I think that helps a bit but some times I think it also makes me more tired.

  6. #5
    The neurologist gave me tramadol for my back a while ago. It helps when I take it. I try not to take it much because it's addictive. I have not tried Cymbalta. Lyrica caused me to have fluid retention. That's another important thing for me, is to watch my sodium intake. It causes fluid retention, and makes me hurt alot worse. I try to go outside alot, it helps me feel better mentally.
    Fibromyalgia is such a vague disease, and it's hard to know what to do and what not to do.

    Do you have Rheumatoid arthritis? I know a few people that have that, and they are in pain alot.
    Oh, Fioricet is like Excedrin migraine, plus a small sedative with it. It helps with migraines. Doctors really don't like to prescribe it around here for some reason, so it's hard to get.
    Last edited by Meg1234; 09-27-2016 at 10:10 AM.

  7. I didn't know that the lyrica causes fluid retention. I had to buy some from the vet for my dog when his back went out. They charged me $80 for a teeny tiny amount, like 1/2 ounce. I also have high blood pressure so I need to watch the salt too. I am also on a muscle relaxer only at night called Tizanadine or Zanaflex. This puts me to sleep an hour after I take it and I get 3 good hours of sleep before I wake up again. It does not leave a hangover, I just wish it didn't wear off so fast, maybe that is why no hangover with it.

    I have osteo arthritis that looks like rheumatoid- my joints are all swollen up.

  8. I've had migraines for many years, but in reading up on fibromyalgia, I also have many of the symptoms. Who usually diagnoses it? A primary care doctor, or is it necessary to see a rheumatologist or other specialist? Those who have been diagnosed---did you bring it up or did your doctor? Thank you for any info!
    Helpful Karebear1163 Rated helpful

  9. My rhuematologist doesnt know what it is and called it one thing but the other rhuemotolgist called it fibromyalgia. There are these tender points- you can google fibromyalgia tender points and see where they are. if you have a certain number of those I think they make the diagnosis. I have my elbows, shoulders and knees and lower back points of tenderness from those charts. Good luck! aa GP should be able to diagnose as well.
    Helpful Karebear1163 Rated helpful

  10. #9
    Yep your symptoms sound pretty much the same as mine (except I don't get periods ) I have fibro as well as me/cfs (sounds like u may have this as well). Kratom works wonders for the pain. It helps me to move normally again. Many people also find LDN helps with the pain too.... for me though I'm not sure

    I'm not sure there's much point I getting a diagnosis as there isn't much that can be done at this point. Cymbalta, Lyrica and Neurotonin are prescribed for it but all 3 made me either brain dead or turn into sleeping beauty. Be careful if you try these!

    My digestive symptoms were due to food intolerances. It took several years to figure out, but I have intolerances to wheat, soy, all spices I have tried, broccoli, Bok choi, etc. Pain in the but! You may want to look into the most common food intolerances/sensitivities for things to start

    Good luck!
    Helpful Karebear1163 Rated helpful

  11. #10
    yeah i have extremely bad fibro.
    i have a question:
    How does one get diagnosed with having fibro?
    I have been diagnosed by several doctors. BUT DO THEY ACTUALLY WRITE THIS IN THEIR CHARTS AND DOCUMENTS?
    Because if it is not in their when i request the documents than i would have to go through that process all over again.
    Its been a long time since i seen that group of neurologists.

  12. #11
    Quote Originally Posted by juniperpansy View Post
    Yep your symptoms sound pretty much the same as mine (except I don't get periods ) I have fibro as well as me/cfs (sounds like u may have this as well). Kratom works wonders for the pain. It helps me to move normally again. Many people also find LDN helps with the pain too.... for me though I'm not sure

    I'm not sure there's much point I getting a diagnosis as there isn't much that can be done at this point. Cymbalta, Lyrica and Neurotonin are prescribed for it but all 3 made me either brain dead or turn into sleeping beauty. Be careful if you try these!

    My digestive symptoms were due to food intolerances. It took several years to figure out, but I have intolerances to wheat, soy, all spices I have tried, broccoli, Bok choi, etc. Pain in the but! You may want to look into the most common food intolerances/sensitivities for things to start

    Good luck!
    Yep...I've got Fibro too. It was in the press last week that the medical profession have just decided to "believe" Fibro exists. After nearly 40 years of suffering I think that's nice of them to finally admit its a disease. lol
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  13. Fibromyalgia is a tough diagnosis, or at least it was when I was diagnosed back in 2004. That was back in the day when the doctors had run all the tests and couldn't give you an exact diagnosis so they just threw the term fibromyalgia at you when in fact most doctors didn't even believe in it at that time, leaving me to feel like a hypochondriac. Even to this day I am afraid to tell the doctors that I have that diagnosis because I don't know if I can trust or believe that it's not still something doctors considered to be a we don't know what's wrong with you so here's all we had kind of thing. I was found to have it two weeks after my only child was born though I was not diagnosed for 3 years after, however it started with me not being able to lift my 7 pound child without immense pain and Joint stiffness migraines knots in my back pain in my neck and the list just goes on and on. I too went through being told that I may have Lupus rheumatoid arthritis, was diagnosed with Lyme's disease and many others. It was just a very hard and frustrating time. So I totally understand your frustration. Sending many prayers your way that you figure out what is going on. The best advice I can give is to try not to become discouraged, keep fighting 4 A diagnosis and proper treatment that you are comfortable with. Easier said than done, but I've been there and if you have any questions I'd be more than happy to answer them... <3
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  14. #13
    I believe I have it since I have almost all of the criteria. But I have not gone looking for treatment as I always seem to have something that needs more attention But I have done a lot of reading and researching.

    Ironically I'm on a med for my ulcerative colitis that is also a treatment for RA, (which I am positive for but it is not too horrendous yet) - it is a rough drug but I have to take it for the UC.

    My best friend has fibro really badly and she has tried everything to no avail. Not saying there are not treatments that work but she just does not respond to the various meds and treatments she has tried. Right now she is doing botox - can't remember exactly where....but IIRC it is for her migraines. She also has lots of med issues. Guess that is why we are best friends

    - - - Updated - - -

    I believe I have it since I have almost all of the criteria. But I have not gone looking for treatment as I always seem to have something that needs more attention!

    Ironically I'm a med for my ulcerative colitis that is also a treatment for RA, (which I am positive for but it is not too horrendous yet) - it is a rough drug but I have to take it for the UC.

    My best friend has fibro really badly and she has tried everything to no avail. Not saying there are not treatments that work but she just does not respond to the various meds and treatments she has tried. Right now she is doing botox - can't remember exactly where....but IIRC it is for her migraines. She also has lots of med issues. Guess that is why we are best friends

    ETA Sorry I wish I had some sage advice/help for you....
    Helpful Bawston Rated helpful
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    I've had fibromyalgia for more than 30 years but was very lucky to get a diagnosis quickly since my doctor was affiliated with the 2 rheumatologists who pioneered a lot of fibromyalgia research and treatment. The problem is that fibromyalgia has so many common traits as other conditions that need to be ruled out...and those are conditions that they've had pretty good tests for so you can rest assured when those get dismissed that you're one step closer to a diagnosis.

    Once diagnosed, I tried a number of treatments including PT (usually terrible for this unless you have someone very knowledgeable in the disease), acupuncture, chiropractic, etc... my doctor tried a number of different medications and that was disasterous since people with fibromyalgia tend to be very sensitive and react badly to many meds. Being with the right doctor at the right time though, I eventually went to an opioid which made all the difference in the world for me. Of course we know how things are now regarding any kind of opioid treatment.

    In addition to that, a major help is what's called myofascial pain release BUT it must be done by someone who really knows how to do it and it needs to be done by a physiatrist or PT who is allowed to work one on one with patients (so PT clinics get 4-6 people going at the same time and bill insurance for everyone in the same 20-30 minute block. During the treatment it feels like they're not doing anything but the next day you feel like you've been hit by a truck and by day 2-3, you'll usually have a range of motion and less pain.
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  16. #15
    Quote Originally Posted by Red53 View Post
    Yep...I've got Fibro too. It was in the press last week that the medical profession have just decided to "believe" Fibro exists. After nearly 40 years of suffering I think that's nice of them to finally admit its a disease. lol
    That's great to hear I am happy that me/cfs is making progress in the states too. Here in Canada though its still awful. There's a clinic I went to here for it. I wish I had never even gone
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    Quote Originally Posted by juniperpansy View Post
    That's great to hear I am happy that me/cfs is making progress in the states too. Here in Canada though its still awful. There's a clinic I went to here for it. I wish I had never even gone
    @juniperpansy...I may have to take back my prior comment about being lucky to get a diagnosis so quickly long ago. I've been seeing an orthopedic doctor/physiatrist for back and neck issues and I guess I just assumed fibromyalgia was no longer questioned...until today.
    This was my 2nd visit with her and I'd followed the 1st visit with 6 weeks of unhelpful PT. Tried to explain that standard PT in the past triggered my fibromyalgia and that having myofascial release done first was very helpful thereby making exercise easy and allowing me tto get back to doing things without PT exercises.

    Guess she didn't like that comment at all and the appointment went downhill from there. Everything I mentioned about how my body reacted or asked about as an option, she countered with just the opposite. As an example, my neck's been really causing pain and my last MRI showed moderate to severe damage at all levels. I asked about a new MRI since that one was 8 years ago and I said I assumed if anything, given symptoms, that it was probably worse. Her response was actually "NO! It OFTEN gets better, you don't need an MRI". So she ordered an X-ray. Now I just have to ask, if there were bulging discs at all levels and narrowed spaces between discs, and I haven't had anything done - why would it get better? Magic?
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  18. I've suspected I have Fibro for a while now, but I dont get how to get diagnosed, is it basically just ruling out all other diseases until they come to the conclusion it is fibro?

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    Quote Originally Posted by cameronhook View Post
    I've suspected I have Fibro for a while now, but I dont get how to get diagnosed, is it basically just ruling out all other diseases until they come to the conclusion it is fibro?
    @cameronhook...it's best to see someone who specializes in fibromyalgia or a rheumatologist. You'll get a general physical and if there are any suspicions that it's not fibromyalgia - based on things like neurological reflexes, they'll do blood work to rule out things like Lyme disease. Some of the tick born diseases such as Lyme and ansplasmosis can mimic fibromyalgia. But the usual giveaway test for fibromyalgia is that they will quickly press key areas on your body called tender points. If those set off alarms in your body, you've probably got fibromyalgia and/or myofascial pain syndrome.

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    Possibly more people are becoming aware of Fibro because people like Lady Gaga have it, so her struggles get partially shown. Which is a good thing. (the publicity. Not good that she has it though, poor thing)
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  21. #20
    Despite being massively fit and healthy I have been stiff, achey, joint / muscle pain, back pain and feeling generally low level unwell for a few years now. I have not really followed up with Dr after first presenting myself with these symptoms 2yrs ago and explaining to Dr that I felt something had seriously gone wrong inside my body. Dr reacted with basically eye-rolling dismissal. But also not followed up because i suspect that the best thing to do is just to keep doing what i am doing - looking after my health and keeping active. I dont know. It does get to me somedays but I try to just move onto the next activity as no-sense in adding misery to the pain. Just to add i dont have the fatigue often described by Fibro sufferers, my energy levels are high, it is just pain and sense of unwellness.
    Last edited by Marcie; 06-02-2018 at 06:02 PM.
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  22. Anyone have fibromyalgia?
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