Describe your pain

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Nov 5, 2006.

  1. chloeuk

    chloeuk New Member

    I thought it may help me if others could describe their pain..the reason for this is that I am seeing my immunologist in a couple of days and I am unsure whether the pain I am getting is from cfs or possibly psoratic arthritis.

    I became ill in January with a virus and about 2 months after the initial illness I develpoed wide spread pain and stiffness in many joints but also muscular pain, it lasted about 8-10 weeks..I then suffered occassionally with it..up until about 3 weeks ago and since then it is becoming worse.

    I would describe my pain as stiffness in some parts of my body, a feeling of pins and needles in my hands and I have weakness and I find it hard to grasp objects. One of the worst pains is a feeling of extreme heaviness in my arms and legs, so much so that I cant raise my arms, I have a burning feeling in my muscles and find it hard to stand.

    The arthritis was ruled out because I was having lots of other symptoms, mainly neuro type stuff...but that is now not the cae..my pain probelms are pain and fatigue..I use a board for my psoriasis and have talked on there about the possibility of psoratic arthritis but I had kind of ruled it out but I was told that what I describe fits the psoriatic arthritis as well as it fits cfs..I have had xrays that showed no bone changes and blood tests came back ok but that can also fit the diagnosis of that disease too...in some ways it would be easier to deal with as there is treatment for that..like methotrexate..I have been on that before for my psoriasis and wondered whether that could work for my pain now..it is now so extreme that I can not function at all and even laying down in bed is so painful...so I would be really grateful if anyone can give me an insight into how their pain feels.

    Chloe
  2. charlie21

    charlie21 New Member

    I have all of the symptoms you describe, and probably more that I could tell you about. It is a vary bizaare complaint isn't it. What I would say to you, is when being put on medication, and you take it month after month, and it isn't doing anything, try to please be your own advocate. For example you can surf the next and see what other drugs there are that may be better for you, print it off and give it to your doctor, many of us on this board are doing this. Mine is mirapex, please look under charlie21, it has been a drug to treat parkinson's disease which has been highly discussed, then look under haleycole, who is also on the same drug and me, and we have been keeping in touch about how we are keeping on this drug. Hope things improve for you. Charlie
  3. Adl123

    Adl123 New Member

    I'm so sorry you feel so bad.

    My pain is similar to yours, but not as bad. I have CFIDS and Fibro and Osteo and Rheumatoid Arthritis. I have long stopped trying to figure out what causes the pain, as I can't take meds for any of them. It looks like you've been tested for rheumatoid Arthritis.

    I wish I could be of more help, but I want you to know that I'm here, thinking of you and supporting you.

    Peace,
    Terry
  4. Michelle_NZ

    Michelle_NZ New Member

    Hi Chloe

    It is difficult to describe pain isnt it? I've had so many problems trying to get effective medications to help with the various types of pain I get. I have CFS, and possible fibro.

    1. Muscular and joint pain - mainly in the legs
    2. Extreme weakeness - main in my arms - like they have no blood in them.
    3. Pain in my hands after being on the computer for too loing, aching pain, like carpals I guess
    4. Burning skin - mostly my face, arms and sometimes legs, sometimes back and sometimes stomach. Feels like my skin is on fire - this is nerve pain.
    5. Freezing skin - also nerve pain.
    6. Headaches - kind of like a migraine, or pressure ones - feels like my head is going to explode and my brain is getting too big for my skull.

    Normal pain killers dont work for me - I am on 3 anti convulsants and they have helped quite a bit.

    Take care
    Michelle
  5. treehuggr

    treehuggr New Member

    Hi Adl123,
    I have osteoarthritis in my lower back...L2,3, and 3, symetrical and fibromyalgia which was diagnosed just over two years ago followed by my feet then my hands. I have arthritis (OA in some of my feet joints and maybe in my knuckles) As soon as I get out of bed in the morning, I walk somewhat like a duck to the bathroom...my feet are so stiff.
    I can't stand on my feet too long or sit at my computer for long.
    I did go to a Pain Management Workshop in my hometown but after awhile, the Pain specialist told me by phone that she wasn't putting me back on her list for the next classes because I had too many psychological issues and I was affecting my fellow classmates.
    I got CD tapes from the first class, and a Body Scan among them, a half hour tape in which the specialist described pain starting from one's feet up. My pain is relentless ache, sharp, stabbing pain and if I sit too long, I tend to feel nauseated.
    I have a difficult time adjusting to being physically limited to not being able to do what I took for granted and that's the most difficult part.
    I used to take a muscle relaxant but that made me feel like a mental zombie for most of the next day and I hated feeling that way. I get muscle spasms occasionally. Crouching, kneeling, sitting, standing and walking...all difficult for any length of time.
    I have a medical pain specialist who diagnosed my fibromyalgia and I have an appointment with him early next year because I need to know what exercises are ok for fibro, osteoporosis and OA.
    I take an anti-depressant (genetic depression) and get very discouraged by my ongoing, chronic pain. I've got a few books, one is by Jon Kabat-Zinn, an American meditation specialist. I was too angry after I got cancelled from the Pain workshops to either meditate, listen to relaxation tapes or to read Kabat-Zinn's book.
    Pain medication isn't effective because I have too many psychological and psychiatric issues.
    I'm new to this list. I just signed on today and my sister suggested this.
  6. kellyann

    kellyann New Member

    Your pain sounds kinda similar to mine, especially burning muscles and pins and needles, and hard to grasp things, I can hardly hold on to dishes long enough to wash them, haha! Do you get lots of headaches in the front of your head? Fevers in the afternoons a lot? That's just a few of the symptoms of what I have, which is Lyme disease. Have you ever had the testing done for Lyme disease? Come on over to the lyme board and check it out if you would like to learn more about lyme disease!

    Take care and I pray you find what ever it is that ails you!
    kellyann
  7. kriket

    kriket New Member



    Well, there are days when I am extremely sore, like when you work out- except you dont work out. There are days that I ache like I have the flu. Then there are days when my muscles just burn and feel strained. Usually when I have all combined I don't get out of bed until it passes.


    Oh yea, and I'm really tired and weak feeling most of the time too.

    Kriket
  8. carebelle

    carebelle New Member

    1.a burning like a sunburn only sometimes
    2. aneedle stabbing that comes sometimes
    3. A achie flu like pain all over
    4. a deep muscle pain like youd get a spang ancle or twisted pain all over.
    5.I also get spaziums down my spine
    6.I also have the heavyiness in my arms and legs
    7.I can not stand but for a couple of mins because of my pain in my low back
    8.I have pain and stiffness in my knees ,shoulders and wrist
    9. I have been finding it hard to hold anything that heavy like a large can to open it with a can opener.
    10. I find it very hard to walk up steps my hips hurt and its harder to lift my legs to go up or down.
    I told my husband I feel like I am slowly becomeing a crippled person.


    I hope you get some help and feel better.This DD seems to be one that brings all kinds of pain thats why for me it hard to treat.
  9. Adl123

    Adl123 New Member

    First, I have to say I love your name. Hugging trees is one thing I believe in!

    Im sorry you have so much pain . It is hard, trying to sort out what is what, and fndng out what to do about it. I can't take many chemical medicines, and so I've kind of given up trying to find out what is causing my pain, which has, by the way, been greatly aliviated by acupuncture.

    I wish you luck, and send you support and prayers. Hang on, there.

    Peace,
    Terry
  10. NyroFan

    NyroFan New Member

    chloe:

    It was easy for me to describe it to my doctor as 'head to toe' pain.

    That he seemed to understand, as he knows quite a bit about fibromyalgia.

    nyrofan