Pain in Legs Mysterious. Diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by HanginginNYC, Jan 15, 2009.

  1. HanginginNYC

    HanginginNYC New Member

    Hi. I want to let everyone know that I value the advice and wisdom from the people on this message board from my previous postings on here and am thankful for it. That is why I am asking a question that doctors and specialists have not been able to figure out or maybe just think that they may have.

    I have been diagnosed with fibromyalgia for over three years. I was just diagnosed again with having a bad case of fibromyalgia from a neurologist. I went to an internist, rheumatologist, and a neurologist. The internist and rheumatologist were both puzzled by my severe, mysterious, unexplained leg pain. They could not come to a conclusion and tell me that it was fibromyalgia because of this leg pain. The rheumatologist did find a severe Vitamin D deficiency and my doctor did diagnose me with Restless Legs Syndrome. I went to the neurologist and he gave me what my internist said would be my final diagnosis that she would stay with and that is fibromyalgia. The problem is that I am not sure that I have only fibromyalgia. Does anyone else on here have severe leg pain (especially in the morning) and you have been given an additional diagnosis with fibromyalgia? What else have you have diagnosed with? I am thinking it could be MS (multiple sclerosis) or spinal stenosis, but I just turned 40 this year and that usually occurs in the elderly. What tests should I have done? Could it really just be fibromyalgia and I should just not even think about another possible diagnosis on top of it?

    Every time a specialist has given me the tender point’s exam, I scream out of the top of my lungs when they get to my leg. It is difficult for me to walk sometimes even a 1/8 of a block and have to be bedridden some days because of it. In order to get anywhere I have to limp when the pain is very bad. My pain is less if I lean forward in a chair or have my legs reclined. I sometimes have to hold onto the grocery cart to shop. I am fortunate to have a job where my employers are very understanding and really hope that they will keep me.

    I have been on Ultracet (tramadol with acetaminophen) for pain, but it has lots its overall effectiveness and most likely developed a tolerance to it. I am looking for another medication to help out and may be on to one that can help (the cough suppressant found in Nyquil), but need to figure out if the leg pain is something other than fibromyalgia so that I can find the medication for it, too.

    I would appreciate any feedback. Thank you in advance. Please forgive me for the length of this message and any fuzzy, unclear thinking. It is the fibro fog.

  2. HanginginNYC

    HanginginNYC New Member

    There is not a place on my legs where it does not hurt. My feet and toes hurt as well and of course the rest of my body aches, but nothing like the legs.
  3. wanderingbluedragon

    wanderingbluedragon New Member

    Have you had a minor injury or surgery on either leg in the recent past? I ask because a friend of mine has RSD (Reflex Sympathetic Dystrophy). She got it from spraining her ankle. I'm not sure if it would help and you'd have to look up some of the symptoms to see if it's anything close to what you are experiencing. You could also ask your Docs. I have spinal stenosis and I have excruciating pain in my arms as the area that I'm affected is in my neck, but before my surgery I was also having a loss of sensation in my legs and feet. I don't remember it being painful in my legs, but if your radiculopathy stemmed from the lumbar might explain the pain.

    Hope this helps,

  4. Janalynn

    Janalynn New Member

    Oh...leg pain. My legs hurt like HELL. My legs are absolutely my worst symptom. When my pain is bad I too limp. They hurt so badly that I can't think, can't talk. I used to think I HAD to have something else going on like bone cancer!
    I am on much stronger pain medication than you and it still doesn't help the pain sometimes.

    The leg pain wakes me in the middle of the night. Horrible deep aches and pain. I pretty much have it to some degree all the time. I know how awful it is. I have Fibro - nothing else.
  5. dannybex

    dannybex Member

    but want to add that the 'official' diagnosis criteria for fibro is really quite silly when you think about it. Where you have to have "11 out of 18" trigger points to get the diagnosis?

    What if you have 10? Does that mean it's not fibro? Ridiculous.

    And others have said there could be as many as 75.

    BUT...if your vitamin D level was "severely low" -- then perhaps your calcium, and other mineral absorption may have caused some osteopenia, or possible osteoporosis. Vitamin D, boron, calcium, magnesium, and trace minerals should help rebuild your bone mass, and even before that, help to decrease your muscle and/or joint pain.

    What was your 25-d level?


    p.s. I know this is a LOT easier said than done, but your body is shouting that you need a lot more rest. If it's at all possible, I would ask for a six-months leave of absence from your job. I speak from experience. I kept working for 5-6 years when I knew I should quit...but the thought was too scary, I had no savings, etc. In hindsight, I wish I had quit sooner. I'm sure some friend would have taken me in...[This Message was Edited on 01/15/2009]
  6. dannybex

    dannybex Member

  7. christina38

    christina38 New Member

    I too have awful leg pain, and foot pain. It's difficult to walk. I have brought it up with
    my Doctors, some shrug, some tell me it's fibro. So all I can say is, you're not alone.
  8. gapsych

    gapsych New Member

    Have you been diagnosed with PLMD or RLS. I also know that feeling like something is wrong with your bones.

    I have always had the RLS but did not need medication until eight years ago?

    When I had a sleep study, my legs did not move around a lot however I guess I am constantly rubbing my ankles with some leg movement at night.

    Have you had a sleep study?

    Clonazepam has helped and then several times, once when I was anemic and then when I was in a horrific flare, I was given Mirapex which did wonders.

    Nofool has PLMD and is taking Requip(?) and has had more success with that than the Mirapex. Sorry NF, don't mean to speak for you.

    There are also some studies that show that Miripex has helped with the pain of Fibro as for me they are similar.

    My pain is always worse in my legs and this AM noticed as I was on the computer, I was rubbing my ankles with the other foot. I had completely forgotten that the neurologist who diagnosed me said that is very common. This AM while on the computer, I realized I was doing this. Until I realized I have a laptop so my legs are in the horizontal position. Funny in all my posts on RLS, I had forgotten that. I also get the same feelings in my lower arms.

    The neurologists' wife and daughter have RLS and he was on the National Board for PLMD RLS. He actually is a pediatric neurologist but also sees patients in RLS/PLMD. He said that he peeked at his daughter when she was sleeping and he noticed that she was rubbing her ankles and realized it was a pattern.

    Sounds strange about the ankles,doesn't it?

    Hangin, hope you find what is causing your leg pain. According to my rheumatologist you can have both FM and RLS. However, I do think they are related. I just saw that you may have RLS.

    Take care.

    [This Message was Edited on 01/16/2009]
    [This Message was Edited on 01/16/2009]
  9. loto

    loto Member

    Hi Janell, I've known I've had FM since about June, but did have leg pain problems about 3 years ago. It turned out that I had a herniated disc at the L5 S1 vertebrate of my lumbar spine. The herniation gradually got worse, pinching the sciatic nerve, causing my legs to hurt badly, tingle, go numb, etc. And, it seemed the only way it would get better was to lay flat. The herniation caused spinal stenosis. Finally, when the pain got so bad and it was difficult to walk, I agreed to a microdiskectomy/laminectomy to remove the protuding disc that was pinching the nerve. It took a while, but eventually the daily, excrutiating pain went away. Not saying this is what you're problem is, but maybe it's something in your back causing the pain in your legs????? I never figured out how I got the herniated disc, never had a back injury, so was very surprised when the mri showed it. Just something for you to think about.
    Best wishes
  10. star273

    star273 New Member

    I have had severe pain in my legs for about 2 years after I was diagnosed. Sometimes they hurt so bad, I want to use a cane, but I am only 37 and I am so embarrrested to show how I feel, I just try and limp around. They hurt at night alot. I take a bath everynight and let them soak in epsom salts. Most of the time they feel better when I get out of the tub. I rub stuff on them and sometimes that helps too. Its just different all the time. They feel like they are really tight, like maybe a muscle relaxant would help. I never know what to do..... I always assumed it was my FM but who knows. I cant run to the Dr. every single time I have a pain. If its muscle I always assume its my FM... I hope you get some relief. Let us know if you find any info out. This board always helps me know that I am not alone.... Hang in there.
  11. MsE

    MsE New Member

    My legs hurt, especially at night, from the knee to the ankle. It's been going on for years. Feels bone deept. I'm going to have a treadmill test this week if I can stay on the darned thing long enough to get my heart beating fast enough to test. Doc ordered it just in case the pain is due to restricted blood flow in my legs.

    However, I don't think they'll find that's the case. They'll say, "My but you are physically deconditioned!" and I'll say, "So would you be if you had had ME/CFS for over ten years!" and that will be that. But, at my age it's best to rule out all the possibilities I suppose, and heart stuff can cause leg stuff.

    I edited to add this: be sure your doc checks your calcium and magnesium levels because if they are low it can cause leg pain and cramping.
    [This Message was Edited on 01/17/2009]
  12. bluewing

    bluewing New Member

    Mine was severe at night, and my doctor prescribed Mirapex a couple of years ago. The pain is so much relieved.
  13. MsE

    MsE New Member

    What's Mirapex?

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