New here, does these symptoms sound familar to anyone?

Discussion in 'Fibromyalgia Main Forum' started by Tommso, Jun 24, 2003.

  1. Tommso

    Tommso New Member

    I read the symptoms for FM and they sound familar to what I have been suffering for the past 10 years. I have not been diagnosed with FM. When I do see the doctor I tell him what I am going through and he never brings up FM. Please let me know if these symptoms are similar or not because its causing me problems trying to get better and lead a productive life.

    My pain started in my legs by having shots of pain that wouldn't last long and I would be tired for no known reason. After a couple of years I started getting pain in my legs, knee and arms. Then after about 5 years I started to have constant pain in various parts of my body which includes my back, legs, shoulders, elbows, hands and wrists. I started to injure quickly in my elbows, feeling tired all the time and feeling depressed. My hands and wrists starting causing me problems at work and the doctor said I had chronic tendonitis. Now its five years later I am having trouble holding down a job because of the more I use my hands the worse it gets. The rest of my body suffers aches and pains as if it circulating. I am feeling more "blue" lately and just plain worn out.

    Please let me know if these are similar or not to FM. The info I read doesn't go through the onset to end.

    Thank you,
  2. pearls

    pearls New Member

    Tell us if your pains are on one side of the body only or on both sides, knee to knee and shoulder to shoulder. Being worn out and tired all the time is one of our symptoms, but many things can cause that. I'm not sure what you mean by the rest of your body suffering "aches and pains as if it circulating." Would you mind elaborating on that? As to feeling depressed, that is a normal thing for anyone with chronic pain, especially undiagnosed chronic pain.

    [This Message was Edited on 06/24/2003]
  3. suz41

    suz41 New Member

    Hi Tommso:

    Sounds like your going through a really difficult time. Yes your symptoms do sound familiar. You mentioned seeing your doctor and him not saying anything about FMS. When you see him next bring in a symptom list and to be frank I would just come right out and ask him about his view on FM. IN addition to general aches with FM there are 18 "tender points" (actually painful) located from your neck down past your knees there should be a chart on any FIbro site that indicates the location front and back. If you 11 of these sites you are most likely experiencing FMS however there are overlapping symptoms with other disorders. If possible can you see a rheumatologists and haveyou had any blood work done to rule out other problems such as Lupus, RA, thyroid disorders and even Lyme disease. I know this may seem like alot of info but I think you will find alot of helpful people here. Let us know how you are doing and welcome aboard.Suz 41
  4. Tommso

    Tommso New Member

    Thank you for responding Suz and Pearl. The pains are on both sides of my body. When I say the pain is circulating I mean that my ankle would hurt for awhile then it would stop and my shoulder and back would starting hurting. If its some part of my body that I use more like my ankles they would hurt on both sides and the same time and longer. My hands right now are almost constant pain and worsens when I grip or after carrying boxes. I feel I never get enough sleep and it shows when I go out.

    I have mentioned to the doctor about RA or other things but he doesn't seem to do any tests. I guess I have to more assertive.

  5. Amyd

    Amyd New Member

    I experience the same things! I thought that I had fibro (I still think I do) but my blood tests show RA. RA makes your hands, wrists, ankles, etc hurt. Also, if one side hurts the other one does too. I have only been DX for 1 month and I am in the beginning stages. I do not have much swelling and no redness. I am hoping we caught it early and I can avoid a lot of the pain and inflamation. Best of luck and maybe you should suggest bloodwork. I finally had to change doctors to get some help. Maybe you should too!!
  6. catgal

    catgal New Member

    Hello Tommso~~Though your symptoms sound familiar to FM and CFS {chronic fatigue syndrome}, they are also familiar to osteoarthritis, rheumatoid arthritis, and various other ailments.

    I don't know how long you've been seeing your physician, but he isn't listening to you, providing medical care, running tests, making referrals, nor does he appear to be interested in helping you. I would suggest you find a new physician, rheumatologist, or pain specialist that is willing to earn the money you pay him, get a diagnosis, and start working on your health problems. Suffering for the past 10 years without even knowing what is causing it is not only negligent, but dangerous--for obviously by what you've told us--whatever you have is a "progressive illness" and you need to get a diagnosis and start managing it before it gets worse. Progressive illnesses cannot be cured, but their advancement can be slowed down--sometimes considerably--and this can mean the difference between being mobile in the future or in a wheel chair.

    I think it is essential that you get proactive about your health care. It's YOUR BODY, and you are the one who's going to have to live in it the rest of your life, and the "quality" of that life is totally dependent on you taking control and advocating for it. Your body has been sending you all kinds of signs, signals, & symptoms that it needs help for the past 10 years. Your body is relying on YOU to take care of it, to get it help, and to do whatever you have to do to see that it receives the medical services it has been crying out for. This physician hasn't done a thing for you, so you have nothing to lose by finding one who will. What have you been paying him for?

    Do not do what I did, and now at 54 am paying dearly and most painfully for. I am 54 and was diagnosed with FM/CFS in my teens. Because the doctors I saw did not believe there was such a thing as FM--I finally gave up and lived a lifetime of suffering. I got so used to aching, hurting, being in pain all over my body, and feeling exhausted that I thought all my ailments were FM/CFS related and didn't do anything about it. Meanwhile, my body was sending me signals like crazy in the form of excruciating back pain, severe muscle spasms, extreme stiffness, sleepless/sleepless nights, complete exhaustion, and missing work. I thought I was in an extended FM/CFS flare. And then I woke up one morning and COULD NOT get out of bed. I couldn't move. My back quit functioning. The pain was unbearable. My mate said, "This is ridiculous", picked me up, and took me to the hospital. I told the physician I thought I was having a very bad FM flare concentrated in my back, and it had been going on for over a year, and that I had woken up that morning and couldn't get out of bed. He poked & prodded around on my back, could see the muscle spasms pulsating, and immediately sent me for an MRI. The MRI showed I had severely advanced degenerative disc disease with 3 discs completely degenerated, a shattered vertebrae, herniated discs, bulging discs, nerve damage, and multiple other problems.

    I was then immediately sent to an Orthopedist who couldn't believe how I had stood that kind of pain for so long nor why I had not sought medical help for what had become such a debilitating disease. I told him I had suffered with the pain & aching of FM all my life--and that though my back, neck, shoulder area, and hands had hurt severely for a long time--I just thought it was an FM flare. He was outraged at my ignorance and told me so.

    By ignoring all the signals my body had been sending for so long--I had allowed the degenerative disc disease to become so progressive & advanced that there was nothing he could do to help me--not even surgery--and by not getting medical care in time to slow the disease down--I had permanent nerve damage that could have been avoided. And the tests also showed that I had rheumatoid arthritis in my hands, neck, and shoulder area--but at least that was in the early stages and there were medications that could slow the progression of that down.

    My body depended on me, was sending up warning signs, and I had neglected to do anything about it until it collaspsed. And, now three years later--I am paying dearly and most painfully for it. By not taking action when I should have, the disease was allowed to run wild and progress to such an advanced stage that without powerful narcotic pain meds--I can't function at all. And some days the pain, swelling, and muscle spasms are so intense--I can't go to work, and this year I have missed so much work that I am hanging onto my job by my arthritic fingernails, and I am my sole financial support. I really, really screwed up just because I wasn't paying attention to my body which allowed a serious, progressive, debilitating disease to devour my back & spine--and now I'm paying heavy duty consequences for it. If I had listened to this poor body early on--the disease could have been slowed down and managed, and alot of irreversible damage could have been avoided.

    I'm a day late and a dollar short, but now I listen to my body, get it the help it needs, and take care of it. Such as it is--it's all I've got. I wish I had realized that sooner--I could have saved myself alot of misery. And in the process of finding a good physician that was willing to listen to me, help me, and allow me to be a partner in my own health care--I had to fire two of them before finding the right one. But, he has made all the difference in the world. He takes a genuine interest in my welfare, listens to my ideas about things I want to try, works with me, keeps me out of pain as much as possible, and makes the referrals I need to see specialists. And because I have to work and this takes a big toll on my body--when he sees that I am not lookiing well--he writes me out a medical leave of absence for my boss and makes me take some time off so the disease doesn't progress so rapidly. He (and I) are doing everything we can to keep me out of a wheelchair and maintain some quality of life.

    So, please don't delay any longer because you don't know what you're dealing with--and since you've suffered for 10 years and are getting worse as time passes--this is obviously a progressive disease of some type. Give your doc the boot and find a good Pain Specialist who will diagnose you, make the necessary referrals for other specialist, and treat your pain adequately. Do this for yourself--your body is depending on you....don't let it down---or someday it won't have any choice but to let you down.

    Start now. Be proactive. Listen to your body, get it some help, take care of it....for it's all you've got. Best Wishes and Blessings to you, Carol....
  7. pearls

    pearls New Member

    That is one of the criteria for an FMS diagnosis. So is trouble with sleeping. In fact, sleep deprivation brings on FMS-like symptoms.

    You definitely need to be more assertive. I would ask to see a rheumatologist. If your doctor refuses to do anything about the symptoms you describe, I would seriously consider looking for another doctor. There is no test for FMS. The tests you take are done to eliminate other possible causes. I took a lot of tests to rule out - in my case - cardiac, pulmonary, and gastrointestinal causes. None of the tests revealed anything that would explain the symptoms I had described.

    Don't jump into self-diagnosis, though. You need a doctor to decide this. My internist thought I had FMS, but it took all the testing, seeing several specialists, and about 8 months for me to get a diagnosis.

    Good luck,
  8. azweeze

    azweeze New Member

    Tommso, I struggled with this for years until I finally broke down and went to a rheumatologist. He went through the 18 pressure points and found all of them. I found out that I also was suffering with osteoarthritis, osteoporosis, bone density disease - along with the fact that he sent me to an EN&T guy who ran tests and found I also had Meniere's Disease - left ear disease which causes constant ringing and noise, loss of hearing, dizziness and loss of balance. You need to have your doctor get you to a specialist and get diagnosed. This disease has so many side-effects on its own. I am just today in what my doc calls "recovery" from a very bad flair up. For the last 4 days I haven't slept at all at night, exhausted all day, "pins & needles" in all my limbs, neck and shoulders hurt so bad couldn't sit or lie down comfortably. You know, I think the worst thing about this disease is that people don't understand! My daughters try, but it's hard for them to understand that the pain is constant - somewhere, something in my body is hurting 24/7 - just some days it's not as bad as others. And as for the "blue" feeling, I know that one too. With regard to this, you just need to find something to focus on other than the pain/depression (my girls don't understand this part either). My sister has been my biggest support (other than other "fibro friends") as she knows what it means to not want to talk to anyone, not want to see anyone, not want to go out, etc. and I tend to stay in the house with the curtains drawn, no lights on at night, etc. pretend I am not here. I had to have my dog put down a year ago and since I can't care for a dog anymore, I got a cat! Best thing I've done. Never had one before (my sis has 12 in the house), very easy to take care of, affectionate without being demanding, and is a reason to get up in the morning because something needs you to exist. I also scrapbook when I can (and even when I shouldn't because I love it), watch lots of movies, take lots of pictures of my only grandchild who is 3-1/2 and the love of my life. I would love to talk to you about this somemore. I know, very well, the physical and psychological sides of this disease. Even us "old timers" at this thing need lots of support and help. My friend told me "Give your problems to God - He's gonna be up all night anyway!" Yea! Company all night! If I can be of any help do not hesitate to contact me - any of you!
  9. Shirl

    Shirl New Member

    Glad you have found our little world here. Tommso, you sure sound like you have FM, but hopefully it is something else, as there is no cure for this.

    I have Fibro for over 20 years, and yes, the pain does seem like it moves around. My husband says I have one pain, it just travels all over my body........

    Mine started in my upper back, then my chest, feet, hands, knees, sometimes my hips. But the worst is my upperback. I can't reach there to do anything with it. The other parts of my body I can get too easily. So I always say its worst in my back.

    You might want to read some of the articles on this site, it would help you next time you visit your doctor. Just go to the 'Home' and 'Library' links at the top of this page. There is a treasure of information there to print out for non-believing MD's!

    Again, a big welcome to both of you, and hope we hear from you all often..................

    Shalom, Shirl