I need honest advice please

Discussion in 'Fibromyalgia Main Forum' started by FMsolider, May 1, 2006.

  1. FMsolider

    FMsolider New Member

    I went to the Rheumy this past friday. She told me she has never heard of anyone being in this much pain from fibro. She even called me a medical mystery. I could barely walk that day and she said that could not be fibro. I was put through a lot of painful tests including the horrible trigger point test - which I have now had 3 times. She ordered more blood tests - even though she knows I have had all those tests a million times. I was prescibed the generic version of Neourton( excuse my poor spelling.)She also bumped up my Zoloft to 100mgs. I got one more scrpit for vicdin and was told she will never ever give it to me again. She left me with the great info that nothing could be done for me.

    I am frustrated and ready to give up. Why can't I function normally? Is this all in my mind? Am I just horribly depressed...well, that I know is true but, I am just giving up?

    I can not even express how down I am now. I just want this to go away. I know I am burdening my family and friends with my consent complaing and consently needing help.

    Guys- I am not even sure what my question is for you...is this fibro or not? Is my doctor not as skilled as she claims to be? What am I doing wrong that everyday - it gets worse...including my mental status?

    Sorry for the long post.
  2. smiffy79

    smiffy79 New Member

    no its not in your head and as i just wrote on another post your fellings right now are natural and we have all had them.

    i went through doubt, i actually tried to force my self to walk 'properly' - i fell over :)

    now i can laugh at myself, who cares? i dont. so what if i wobble or cant get out of the house at this moment in time.

    look to what drives you. for me its dogs and i know my friends here have heard this before and will be saying oh smiffy shut up but i started small.

    i started to study then took in my shih tzu, i continued my study while i trained her then came sam my very old rescue dog (her life was a misery so i tried to show her a good life b4 she died) then my 1st deaf dalmatian then my 2nd both now trained to sign.

    to cut a long story short i compete with my dogs and attend a training group, i operate for 2 rescues and visit ppl to help them to train their dogs (unpaid) soon i will finish a section of my study and be able to start my own training group. i will continue my study, you can fight this. yes you will have bad days when you dont want to get out of bed but you must stay driven.

    find your goal and take it day by day. my first goal was just to train my shih tzu. every time i reach a goal i set a new one. it is possible, there are ppl here with their own established successful businesses.

    your goal doesnt have to be work related, just something for you :)
  3. Cromwell

    Cromwell New Member

    I know how you feel, my PA told me I was "something of an enigma" I am never going back there, as she also said this with a huge smirk.

    Please do not give up. My recent very severe flare of three months or so finally has quieted to zappy head pains and arm/ hand leg ache. I can do a bunch of stuff this past two weeks I could not do in January for sure.

    It occurs to me that the Zoloft could be making you down. It did me. Plus it made my aches worse. I think if you need something that addresses both why not Elavil? I also had a hard time with the neurontin as it made me slur my words and feel bad. The rheumy said it was because it was too high a dose. The pharmy said it was because it had been given as well as valium I was taking for nerve pain.

    Anywya, please hang in there.

    Love Anne C
  4. NyroFan

    NyroFan New Member

    I had similar problems when I was on Nuerontin. Maybe it's the cure that is causing the problem. It is a possibility.
    I would walk 'funny' and looked so much different.

    As far as complaining to family/friends: do it here.
    We know sometimes we can not go over it with family
    since they usually do not understand.

    Why you can not function normally: it comes with the territory if you have Fibromyalgia.

    And no more Vicodin, huh? Sounds like you might want to shop for another doctor. I have been getting Percocet, previously neurontin, form the same doctor for three years now. He knows that I am not abusing them.

    If you are getting progressively worse I would suggest that you get in the spirit and go gung-ho in finding good doctors who can help you and give you a proper diagnosis.

    You take care and get busy attacking the disease right now and set things up for good health care.


  5. AnneTheresa

    AnneTheresa Member

    I couldn't fathom that the severity of my condition and the pain I suffered from, was the same illness as the fibromyalgia that was described on the pamphlet my rheumy passed on to me when I was first diagnosed.

    This particular information pamphlet made fibromyalgia sound like no big deal because honestly, most people in the general population have SOME muscle pain, morning stiffness etc. So for people who don't know better, it's easy to assume that fibromyalgia is a minor inconvenience rather than a debilitating illness.

    It's a matter of vocabulary. 'Muscle aches and pains' doesn't come near to describing what we live with. It's similar to the issue that the name 'chronic fatigue syndrome' doesn't do justice to that horrible and debilitating illness.

    I talked to my doctor about this same issue and he said the best I could do to convey my condition to others was to say I have SEVERE fibromyalgia. Like arthritis or similar conditions, fibromyalgia can occur anywhere along a continuum of symptoms. Some people have mild symptoms whereas others have such bad symptoms that they're unable to walk, are housebound, etc.. It's all a matter of degree.

    Having said all that, your rheumy sounds ignorant of the reality that is fibromyalgia. For her to say she's never seen anyone with this much pain, etc. from Fibromaylgia shouldn't mean fibromyalgia this degree doesn't exist. It simply means she hasn't witnessed it before. Now she has witnessed it and hopefully the next person who comes along with severe fibromyalgia will be treated with a bit more respect.

    There certainly are people diagnosed with fibromaylgia who suffer to the same degree you do (right here, on this board)so please don't feel you're alone. It is most definitely, not in your mind. Fibromyalgia is very real and unfortunately, it can be as devastating as you describe.

    God bless,
    Anne Theresa
  6. woofmom

    woofmom New Member

    A couple of weeks ago I went to an internal medicine doctor. As soon as I opened the doors to the building my pulse rate started going up, my blood pressue shot up, my eyelids got extremely swollen, I had a hard time breathing and I got completely exhausted. They had and have no idea what was going on. The nurse said she'd been a nurse for twenty years and had never seen anything like this. I told her to pay attention cause she was going to see more of this in the near future. The doctor wouldn't even check my blood pressure again. He didn't want to get near me.
  7. Fudge43

    Fudge43 New Member

    FMsolider .. These conditions are so complicated and unpredictable from day to day at times .. no doctor is sure of what they are doing treating us ..

    I had a bad rheumy .. but I wavered in my asessment of him until my own doctor was surprised by what he wanted me to do .. then a group of patients in an advocacy group knew this doctor and said he was NOT a good one ..

    Trust your instincts .. you know how you feel and what you feel with a doctor's atittude .. run do not walk .. away from a bad situation if possible !

    The rheumy I had insisted I should be on 25
    mg of elavil .. not 100mg .. took me down to 25 in 3 weeks and I almost lost what sanity I had .. my own GP was shocked .. well that was the end of that one .. the pain and nerve sensation that elavil controls for me ( and I am one of the lucky ones ) was unbelievable ..

    I'm steady at 75mgs now .. It was a double edged sword .. I suffered going through this .. BUT .. I found out how much this drug does help me in combination with good pain killers ..

    We are all so different .. I know I'm not as bad as some .. but worse than others .. there is no "standard" of pain we should endure .. and why should we endure pain to the point of being so close to feeling like giving up ?

    Hold your ground and keep trying to find a doctor that you feel comfortable with ..

    Smiffy is right about trying to find something that you are interested in ( to help stop thinking about how bad we feel) .. she found it with dogs .. I couldn't do what she does .. too physical .. but .. I am a garden/plant nut .. I manage to do things in the garden that others couldn't do either .. the key is something we lose ourselves in ..
    That break away from "reality" saves our souls a little.

    I hope you can find a decent doctor .. I hope that you feel better .. and I hope you won't give up.

    Joy : )
  8. julieisfree05

    julieisfree05 New Member

    There is no such thing as "too much pain to be FM"!!

    I know people who have morphine pumps in their bodies because their FM pain is so severe and they are still in severe pain even with the morphine.

    Of course, you could have something else (or something else with the FM), but "too much pain" is not something that can EXCLUDE FM as a diagnosis!


    julie (is free!)

    You' better get busy living, or get busy dying.

    - The Shawshank Redemption (Stephen King)
  9. FMsolider

    FMsolider New Member

    Once again, thanks to everyone who posted. Your support litterly means everything to me. Excellent opinions and advice from all. If only there was a doctor out there who also suffers from FM or CFS....why isn't there one- why does it not afflict them?
  10. FMsolider

    FMsolider New Member

    Once again, thanks to everyone who posted. Your support litterly means everything to me. Excellent opinions and advice from all. If only there was a doctor out there who also suffers from FM or CFS....why isn't there one- why does it not afflict them?
  11. Edna

    Edna New Member

    I know you posted this a long time ago but this is my first time on the board so please forgive me for resurrecting it if my suggestion is not needed or wanted.

    I had CFS/FMS for over 10 years. The only thing that helped me is glyconutrients. Please don't think I am trying to sell anything because I'm not. I'm only sharing with you what I KNOW has given me my life back.

    I heard about the glyconutrients from a friend and went online and did searches and got some.

    Please look into it. A year ago I could barely get out of bed to go to the bathroom. About a year ago I started taking glyconutrients (the body uses over 200 sachharides to support itself). The glyco's are the 8 that work specifically with the immune system.

    After being on the glyco's for only 2 months I started to cook, clean, do laundry, go to the grocery store, clean out my car, dust, vacuum - all normal things I couldn't do for 10 years before.

    Now, a year later I pray for a day off because I'm so busy. And yes I still have CFS and I have to still watch out for myself and rest when I need to. I still have to say no sometimes to friends and family when I know I am overextending myself. I still need to get a nap in some days. CFS & Fibro don't control or run my life anymore.

    I still have Fibro in my right neck and shoulder but not the pain like I used to. And I still go for deep muscle massages to keep on top of the stiffness but I can sleep a full night's sleep now. I stay up late because I want to, not because I CAN'T sleep.

    I am off all pain and depression medication. I take a natural product if I feel like I need temporary help in the depression department, which now seems to be a seasonal thing with me - not an overwhelmingly crippling problem any longer.

    There was a time when I was wrapped up in such pain and darkness that I didn't know if I wanted to live anymore or not. I function perfectly normal now. And I know it's the glyconutrients because nothing else worked for me in all those 10 years. So please go on the net and do some research on them and try them. They work(ed) for me when nothing else did or will.

    My girlfriends husband has severe back pain and was taking 3 pain meds - he's been on the glyco's for abt 6 months now and he still has to take one pain med but he's off of 2 of them.

    It's not a cureall by any means - it's just giving the immune system what it needs to function properly. Let me know what you do and Good luck. Edna

  12. HagerTX

    HagerTX New Member

    Sorry to hear about your situation. Sounds very similar to many on this board, so you are not alone. Although my specific symptoms vary significantly than most people here, I can relate to having a chronic condition with only speculation of a diagnosis.

    There is a lot the medical community doesn't know (just in general) and that's certainly the case with CF/FM. Opinions will often vary from doctor to doctor--some want to blame everything on stress if they can't find any clinical evidence of something else. Either way, you mentioned the stress/depression (which IMO is understandable with any significant health issue).

    There are some general things to try to improve health which many here have had success with. For starters you can make some mods to your diet which may help things. Others will probably 'bump' some existing posts and threads with info on that. How are you sleeping? If it's anything less than ideal, there are some meds out there that may help that. Poor sleep can affect the body's ability to stay healthy.

    Is your Zoloft helping at all?

    [This Message was Edited on 05/01/2006]
  13. FMsolider

    FMsolider New Member

    Yes, my zoloft does seem to,"help," my depression and each time the bump up my dosage I tend to feel a little relief pain wise for a few days. But, I got to say if ya would have seen my nervous breakdown episode this weekend you may say that Zoloft isn't helping at all.
  14. HagerTX

    HagerTX New Member

    I essentially had a near breakdown about 5 years ago. I'm sensitive to most meds especially the SSRI's such as Zoloft, Lexapro and Paxil.

    I think Zoloft is mainly geared toward depression--although it can help the anxiety component (most cases of depression have a mix of both). If the stress continues, you may want to consider some different meds--that may help the stress/anxiety portion of ordeal, perhaps help more than Zoloft is.

    Have you tried Lexapro or Paxil? both those seem to work fairly well on anxiety (for those who can tolerate them). The bottom line, however is that most people respond differently to these meds. What may work for you may not work for the next person, so you may have to try a few before you find a good one.

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