Anyone out there who knows about fibromyalgia? Help!

  1. Over the course of the past couple of years, I've developed what I think may be the symptoms of fibromyalgia, but not wanting to appear to be the hypochondriac, I have mentioned this to no one as yet. Does anyone out there know of someone with the disease or have the disease themselves? If so, what were the signs and symptoms?

    I have developed soreness to gentle pressure over my chest and hip areas, have increasingly worse "burning" sensations over my middle and upper back, generalized achiness that feels as though I have the flu (worse after meals), GERD, Sx of IBS--bloating, gastric distress, flatulence, alternating diarrhea and constipation, nausea after eating about 50-75% of the time. My periods have been painful for a long time, but the PMS is getting progressively worse along with the cramping. I was exercising regularly, but I find now that the following day leaves me feeling worse than ever--I ache all over and feel like I've been run over by a truck! The other thing that is of concern is that I have sleep apnea (dx by sleep study) with daytime fatigue that is unbelievable sometimes. I feel zoned out a lot of the time and as though I have no memory retention sometimes. Before I go running to a physician about all of this, I wondered if anyone had any experience with it. I am afraid of being blown off by most internists or, even worse, treated as though I am crazy, which I know I am not. I have been tracking these symptoms for at least the past year and things are only getting worse, so I have to do something. Thanks for reading this and for any help any of you can provide :kiss

    Suzanne
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  2. 12 Comments

  3. by   cargal
    I, too, felt I had allot of the symptoms, and I felt blown off by my MD, but I had gone in armed. I asked for elavil to treat the pain, and he stated, why not?, and it helped immensely. I followed up with a rheumatologist who thought that I was not suffering from fibromyalgia, but myofaciaitis (sp?) and said stay on the elavil. You may also be hypothyroid. My guess is that you should see you pcp and ask for a TSH, elavil and f/u with a rheumatologist who is able to diagnose by eliciting pain on the tenderspots. The book that I got states even if the tenderspots do not elictit pain-if it looks like a duck, walks like a duck, quacks like a duck.....
    Much is not understood about this disease. The elavil really helped my sleep better and concentrate better too. A disruption of the sleep cycle may be at the root of the fibromyalgia condition.
    I too, suffered from "brain fog", neck and shoulder pain for twenty years,IBS, painful periods, PMS, and on and on. A google search or an Amazon book may be a good place to start.
    Good luck and PM me if you want to talk more.
  4. by   Aussienurse2
    www.fmscanberra.healingwell.com Might be a good place to start looking. All the best, love Kate.
  5. by   SmilingBluEyes
    If you think you may have this unfortunate and often difficult-to-diagnose disorder, I would make my concerns CLEAR to my family doctor, were I you. It would be good to get a referral to a specialist such as one in rheumatology, for more definitive treatment.

    As you know, it is difficult to definitely diagnose, but that is why it is so important you seek specility care sooner rather than later. I wish you well and am so sorry for your problems. Let us know what happens either way. We care!
  6. by   NRSKarenRN
    I seemed to have developed this over the past 5-7 years and have found above site helpful.

    Based on the symptoms you described, take a look at: polycystic ovarian disorder.

    Previous discusssion+ site links:
    http://allnurses.com/forums/showthre...cystic+ovaries

    I was hypothyroid about age 18-20. Got married at age 20. Had abnormal cycle for years with infertility til given prednisone to supress pituitary gland. Went on to have two easy pregnancys/C sections and regular cycles since. Over weight the past 25 years. Since age 40 developed fibromyalgia most muscle aches all same site, afternoon mental fog. Just learned of the polycystic thing by previous poster and I wonder if that was really the problem.
    Afternoon mental fog has been eliminated by taking Ginko Biloba every AM per PCP recomendation and its worked well for me. Pain mgmt includes Darvocet N, NSAIDS during acute flares only since 1 ulcer+ gastritis. I am the spitting image of my fathers siter Marian and she had similar problems all her life but were never named. I truly believe it's heredity.

    Some days able to cook up a storm and handle 6 QT stock pot with ease, other times lifting even Corelle dinner plate brings on painful spasm. I've found that Aquatic exercise at least weekly, keeps that pain and soreness to a minimum. Just renewed yesterday: $36.00/month. Cheeper and less toxic than many NSAIDS. Good luck in your search for help. PM if needed.
  7. by   bestblondRN
    Thank you to all of you who responded--I will be following up on this as soon as my health insurance kicks in (I just started a new job).

    I have been taking NSAIDs daily for a long time now, and have concerns about burning out my kidneys, but find myself worse without them. The mental fogginess is just unbearable sometimes, not to mention embarrassing.

    Thanks again for your advice and for sharing some of your experiences.
  8. by   recnurse1
    I have been to a rheumatologist and told I have fibromyalgia.. I have all the symptoms, but he told me that it is not a disease and can do nothing about it. I am living on Aleve to get through the day, some days I hurt so bad I walk around in tears. Most of the time though it seems that I am pretty much ignored, so I don't talk about it. I am 48 years old and still have a lot of years to work ahead of me. I'm getting so depressed, been on Paxil and Xanax for years, but seems the depression is not being held anymore by this. I feel like so much dirt when I am ignored by everyone, I feel like I'm God's private little joke. But i keep trying to survive this all and want to be called RN someday.Just my little moaning and whining session . Sorry .
  9. by   bestblondRN
    Originally posted by recnurse1
    I have been to a rheumatologist and told I have fibromyalgia.. I have all the symptoms, but he told me that it is not a disease and can do nothing about it. I am living on Aleve to get through the day, some days I hurt so bad I walk around in tears. Most of the time though it seems that I am pretty much ignored, so I don't talk about it. I am 48 years old and still have a lot of years to work ahead of me. I'm getting so depressed, been on Paxil and Xanax for years, but seems the depression is not being held anymore by this. I feel like so much dirt when I am ignored by everyone, I feel like I'm God's private little joke. But i keep trying to survive this all and want to be called RN someday.Just my little moaning and whining session . Sorry .
    Have you asked your rheumatologist about elavil? It's great for nerve pain, as are some other medications. Maybe it's time to adjust your treatment since you are feeling so badly. Also, do a search for fibromyalgia on Google--there are some great sites to look at with up-to-date information. And fibromyalgia is a recognized disorder just like arthritis--your rheum. is incorrect about that.

    Good luck in getting everything under control. You are in my thoughts.
  10. by   NurseDennie
    If you think you might have fibromyalgia, then you need to talk with a rheumatologist. The sleep apnea points to fibromyalgia. I have contact with a guy who pretty much specializes in fibro; certainly he's the expert around here. He sends everybody he even suspects of having fibro for a sleep study.

    Depression is also associated with the disease. Whether as a cause or effect, I don't know. I know that most people with fibro need the sleep study and treated for whatever sleep problems he/she has, they need antidepressants, GOOD vitamins and a lot of times, a sleep aid.

    It's not a disease that's easy to dx, and it's not a disease that is usually treated 100% satisfactorily. It's a pain in the Bumm and other places, but there are definitely things that you can do for relief. Recnurse, get yourself a different rheumatologist! I have to admit that docs don't go out of their way to attract fibro patients, and I can kinda see why. It's not something that they can cure, the sx are difficult to control, so the patients are usually unhappy, they've come to them after being run around by other doctors so they're fed up and unhappy....

    But you'll find somebody.

    Love

    Dennie
  11. by   recnurse1
    Thanks for your words of encouragement... I've been pretty down lately. I made an appointment with a new rheumatologist for November 1st. He was recommended by a friend who's mom has fibro, and she said he's wonderful. I'm looking forward to my first visit.
  12. by   bestblondRN
    Originally posted by recnurse1
    Thanks for your words of encouragement... I've been pretty down lately. I made an appointment with a new rheumatologist for November 1st. He was recommended by a friend who's mom has fibro, and she said he's wonderful. I'm looking forward to my first visit.
    Let us know how it goes with the new doc--and this site is a great place for support when you need it. Keep us informed of how you're doing. :spin:
  13. by   mark_LD_RN
    my wife has it ,i recommend you see a doc who specializes init. she was first told she may have it by a massage therapist that noted she had all the trigger points. we were lucky enough to find out our family doctors wifehas it so he is up on the latest treatments for it. one of the mainthings is rest, she now takes elavil every night. and alleve and or darvocet during flare ups. one other med that i dont recall at the moment.
    well anyway find a doc that will listen to you.
  14. by   PAMELA1957
    Quote from bestblondRN
    Over the course of the past couple of years, I've developed what I think may be the symptoms of fibromyalgia, but not wanting to appear to be the hypochondriac, I have mentioned this to no one as yet. Does anyone out there know of someone with the disease or have the disease themselves? If so, what were the signs and symptoms?

    I have developed soreness to gentle pressure over my chest and hip areas, have increasingly worse "burning" sensations over my middle and upper back, generalized achiness that feels as though I have the flu (worse after meals), GERD, Sx of IBS--bloating, gastric distress, flatulence, alternating diarrhea and constipation, nausea after eating about 50-75% of the time. My periods have been painful for a long time, but the PMS is getting progressively worse along with the cramping. I was exercising regularly, but I find now that the following day leaves me feeling worse than ever--I ache all over and feel like I've been run over by a truck! The other thing that is of concern is that I have sleep apnea (dx by sleep study) with daytime fatigue that is unbelievable sometimes. I feel zoned out a lot of the time and as though I have no memory retention sometimes. Before I go running to a physician about all of this, I wondered if anyone had any experience with it. I am afraid of being blown off by most internists or, even worse, treated as though I am crazy, which I know I am not. I have been tracking these symptoms for at least the past year and things are only getting worse, so I have to do something. Thanks for reading this and for any help any of you can provide :kiss

    Suzanne

    From your symptoms being like many of mine at various times, I would guess that you might very well have FMS.

    When I first began having all my symptoms many, many years ago ... I wrote a list down of all my symptoms. They were infinite it seemed. I remember so well thinking that, "I am NOT going to tell these to a MD, they will think, I'm nuts."

    I tended to rationalize it away, because, after all, at that time, "It was all in your head." I still let this one statement swerve me away from treatment even after (in the early 90's) being told by two MD's that I had FMS.

    But this FMS "monster" attacked further and one day when I was at a bookstore, I headed over to the Medical section and found there a book written by a female Rheumatologist who had FMS.

    I flipped to the symptom section ... And there they were, EVERY one of my symptoms ... EVEN the totally weird ones.

    I then went to a Rheumatologist and said, "Okay, I've got it so lets work on it."

    It will take a while to find what works for you. But hang in there, you will eventually find what works best for you.

    I'm sorry that you have to go through this, as I wouldn't wish it on anyone.

    Studies are taking place that will one day give us all a way to get a handle on this syndrome, and I really do believe it is all going to come down to the size of the cervical spinal area.

    The sooner the better ... PLEASE!

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