in pain in michigan.. PLEASE help

Discussion in 'Fibromyalgia Main Forum' started by sivart0156, Feb 3, 2007.

  1. sivart0156

    sivart0156 New Member

    Please anyone out there help me. For years now I have been in bad pain from my lower back and knees. The first doctor I mentioned this to said if these areas hurt, don't touch them. It took me another two years to have the nerve to bring this up again. I finally did. I had an MRI, a ct scan, many blood tests, most normal until I emded up in the emrgency room one night and had a HORRIBLE time with open gall bladder surgery, a fourth degree burn, and 5 day hospital stay. I have been horrible since and that has been almost a year ago now. I went to my doctor, he diagnosed me with polymyalgia rhuematica. He sent me to a Rhuemy and within 5 minutes said I definitely did not have polymyalgia rheumatica. However, she would not even discuss FM. I am absolutely convinced that I have FM but she would not talk about it. I am in severe pain, wanting to sleep 15 hours a day and just miserable, but cannot get anyone to listen to me... Any suggestions?

    Anyone in West Michigan with any suggestions of a doctor who speacilizes in FM?
  2. ravenpaige

    ravenpaige New Member

    Sivart,
    Don't know if this will be much help, but I'm in Northern IN (South Bend area), and my daughter was diagnosed with fibromyalgia about 2 years ago. She was actually diagnosed by a pediatric rhuemetologist out of Indianapolis (Riley's Children's Hospital), so that's probably not much help. But I did call around just recently and found an Infectious Disease doctor who agreed to see both myself and my daughter (the daughter was a big one, since she's only 16, and many doctors don't want to deal with pediatric patients...that's why we ended up down in Indy for her diagnosis). Anyway, I haven't been to see him yet, since we have to first get a referral from the primary (still working on that), but his name is Tompkins, and he's through SW Michigan Medical Clinic (I believe).

    My sister, who has also been diagnosed with Fibro, sees a doctor in St. Joe, through Lakeland, I believe. But I don't know the doctor's name. If you are close to that area, I can try to find out for you. I'm not sure if she's that happy with her doctor either, however.

    What I have found with rhuemetologists is that they either don't know about fibromyalgia, or they will happily diagnose it and then say: "take these antidepressants," or "sorry, there's nothing I can do for you." The real problem is that fibro is an umbrella diagnosis, just like CFS, and so what you really have to do is (hopefully) find a doctor that will systematically look at the potential problems and then rule them out one by one until they find the solution. I'm still looking for that for both myself and my daughter.

    Meanwhile, there is a lot you can do for yourself to try to figure out what might help. You don't say if your rhuemy mentioned any other possibilities, but I did a quick search of "polymyalgia rhuematica" and I see it is a type of inflammatory arthritis. Since your rhuemy ruled that out so quickly, I would guess it's because she looked at your SED rate (from a blood test) and found no inflammation. The problem with fibro compared to most other arthritic condidtions is that there is pain that is not caused by inflammation (most of the typical pain people have, such as from strains or headaches is caused by inflammation). So if you've found that your pain doesn't seem to get any better if you take ibuprofen, that's why. Ibuprofen is an anti-inflammatory, and if there's no inflammation, then there's nothing for it to do.

    You can try something like Tylenol, which works in a different way for pain and so might help some. However, that never worked much for me or my daughter. You can also try things like heating pads or hot baths or showers. If your pain is waking you up, then you can try some things like melatonin, valerian or even a calcium/magnesium tablet (these are all available at the pharmacy over the counter). These tend to enhance sleep somewhat and the calcium/magnesium has the addition benefit of helping some with leg cramps or general muscle cramps, so if you suffer from those, it may be worth trying.

    Depending on your level of pain, you may want to try to get your GP to prescribe some narcotics or an antidepressant. The antidepressants mostly work, however, by enhancing sleep, so you may want to try the over-the-counter remedies first or if your GP doesn't want to prescribe for you. You can also get St. John's Wort over the counter (go to a health food store if you can't get it at a pharmacy). That helps both with sleep and depression. As for narcotics, some people here find them very helpful, but for others (like my daughter and I), they seemed to not do much good unless they knocked us out entirely. And for the two of us, the fatigue was probably worse than the pain, so the last thing we wanted was something that made us even less functional.

    This is a long post so I hope I haven't overwhelmed you, but the bottom line is, if you have pain or other symptoms and they have not come up with something that will help, then you must become your own advocate and keep looking for help, from doctors or on your own, until you can find the thing that will work for you. But coming to this board was a good start. There are many knowledgable people here with many good suggestions. They will not all work for you, but you can find much information in one place. A lot of the informaation available here took me years to gather on my own, looking for solutions.

    Wishing you better health. Let us know how you are doing.

    Terri
  3. winsomme

    winsomme New Member

    there is some debate on the how independent CFS and FM are, but a few people on here see Dr Lerner just outside of Detroit.

    if you do a search or post a question about him, i'm sure you will find all the info you need on him.

    let me know if have trouble, i will try and find his contact info for you.

    thanks
    bill
  4. mrpain

    mrpain New Member

    You know, just like you, I've called 3 different rhuemy's and 2 different allergist office and as soon as I mentioned fibromyalgia, they didn't want to talk to me anymore. And one had already scheduled me before I mentioned it but then said the doctor wasn't taking anymore patients.

    Isn't there a law against that?
  5. Lendy5

    Lendy5 New Member

    EDIT

    Been wondering how you are doing since your original post on Jan 2??????????

    Many replied to you with no response of how you were doing?


    As someone else requested please fill out your profile so we may know more about you and be able to help more. You don't have to give your location but maybe share something about you as far as what you suffer from.

    CAROLIN[This Message was Edited on 02/04/2007]
  6. ravenpaige

    ravenpaige New Member

    Carolin,
    For what it's worth, I also don't have my profile filled out, mainly because I'm new and don't really know what to say, and partly because I'm a little concerned about putting out too much information.

    I don't know sivart, and of course, your concerns could be valid. But I also am the type of person that tends to lurk on boards. I'm mostly just shy, but if I don't feel like I have anything worthwhile to add, then I just won't say anything.

    For what it's worth, this thread has been very helpful to me, since I live in the same general area, so I'm getting lots of info on potential doctors for my daughter and myself. This was actually a question I wanted to start my own thread on, but I hadn't gotten up the nerve yet. So for everyone who has answered with such good information, many thanks from me.

    Being shy, I perhaps tend to give people too much the benefit of the doubt, but it may help everyone to know that, even if your time and information are not of use to the original poster, they are probably very useful to someone. So thank you.

    Terri
  7. sivart0156

    sivart0156 New Member

    Thank you all for the replies. I don't know a whole lot about how the board works at this point so I did not get all of those replies from January but I sure appreciate it!

    Some details from what I know is that the rheumy I was sent to from my family doctor took SEVERAL blood test. When I was diagnosed with with polymyalgia Rhuematica, my sed rate test had came back elevated with my family doctor. The results with the rhuemy showed that my sed rate had doubled within the month that her tests came back as well as my C Reactive protien was elevated. My Vitamin D Level was extremely low and I am anemic (which I knew). Every other test was normal. She said that she thought I should be concerned about the highly elevated rate of the sed rate, however, she was sure it was not anything to do with my joints. She sent me back to my family doctor and suggested to him he do a CT scan and MRI which he ordered reluctantly, and those came back normal. I believe my sed rate being elevated is due to gyno problems which I have suffered for many years including several conditions which I tried to discuss with him and ask him about. I also asked him about the Fibro, and he would not even discuss it with me. My last family doctor did the trigger point test and a few others and he was leaning toward a diagnosis of FM. Unfortunately, after my gall bladder surgery and obtaining the severe burns, I changed doctors as him and the doctor who caused the burns sent patients to each other and he would not treat the burn or send me to a specialist at my request either. It was a mess, but at that time, my priority was having my burn taken care of as it was absolutely excrutiating, as well as just having major gall bladder surgery.

    I have not been the same since. I feel horrible every day. I am tired, I hurt in ever joint, I cannot sleep on my right hip or lower back it is so excrutiating, and I guess tired is not even a good explanation. I am absolutely exhausted and feel as though no matter how much I sleep, I am never caught up. My shoulder feel tense all of the time and I just feel absolutely horrid. All I want is a doctor who will listen to me. The Rheumy said she had no idea what was wrong with me, but she was sure it was not polymyalgia rheumatica. I am just frustrated and want someone to realize how I feel.....