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lawmar

Does this sound like Fibromylagia?

lawmar
17 years ago

I am being treated right now by a rheumatologist for psoriatic arthritis. But, I am still having lots of pain in the joints and also, it seems my muscles. My shoulders hurt and my knees hurt just above the knee caps and my thighs hurt on the backs of my legs. Also my arms above the wrists and also above the elbows. The pain starts toward evening time around 5 PM. It gets unbearable and sometimes makes it hard to even raise my arms or get up out of the chair. It's hard to roll over in bed at night because of the pain - it just seems like I hurt everywhere. My doctor has never said anything about fibromylagia, but I am wondering if I have that too, since that and arthritis seem to go hand in hand. I am on sulfasalazine and diclofenac and that has worked wonders for the joints in my hands, but the rest of my body is in almost constant pain. I take muscle relaxers to help me sleep at night. Has anybody ever heard of Activive and has anybody ever tried it? I saw it on a website for fibromylagia and was wondering if it would help any.

Comments (22)

  • evatx
    17 years ago

    I sure know the arthritic pain you're going through! I was diagnosed in '79 with rheumatoid arthritis and now my dr. thinks it's psoriatic arthritis. I'm presently on Celebrex which gives me some relief, but it's an ongoing battle. I had total knee replacement 7 years ago and am probably facing having the other one done next year. I have a sliver of cartilage left in it. I don't know much about fibromylagia, but I hope you find some answers and some relief for the pain!

  • devorah
    17 years ago

    What you are describing certainly sounds like fibro. Do you also hurt across the tops of your shoulders if you press on them lightly with your fingers? Press along your clavicle too and see if that hurts. Did you have "growing pains" as a child? Are you double-jointed? Do you produce a lot of tartar? Those conditions often go hand in hand with fibro.

    According to my rheumatologist, a lot of this stuff is hard to distinguish. I guess there are tests that can identify rheumatoid arthritis, but the rest is kind of guess work. My doctor says that I have all the symptoms of fibromyalgia, but also many of the symptoms for lupus so she isn't sure. She gave me a muscle relaxant so that I can sleep at night (Flexeril) and she has just started me on Planquil to see if that will help with the pain as well. Celebrex helped me, but my regular GP didn't want me on that for more than a couple of weeks. I understand that the FDA is looking hard at that drug and considering dropping it.

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  • lawmar
    Original Author
    17 years ago

    Well, the tops of my shoulders and my clavicle don't hurt. I did have growing pains as a child, oh my, I can remember my legs aching so bad and I do seem to build up a lot of tartar on my teeth, I go to the dental hygienest every 6 months and it sure seems like she has to scrape a lot. And I brush my teeth every day, most of the time twice and I floss faithfully. Nevertheless, I end up with lots of tartar. I've been reading a lot about fibro these days, although my doctor has never mentioned it. He did test me for lupus though. But then again, he never says much of anything - I feel like I am being rushed through the appointment with him mostly sitting there and saying 'mmmm'. Then he stands up, rattles off some things and orders blood tests, which by the way cost me $278 every two months because my insurance doesn't cover lab work and then high tails it out the door with instructions to see him in 3 months. Sounds like I am getting discouraged, but I am. I see him in October, I'll have to ask him about the fibro then. Seems like we pretty much have to diagnose ourselves, doesn't it?

  • catherinet
    17 years ago

    Hi Lawmar,
    Are you male or female? What is your age?

  • lawmar
    Original Author
    17 years ago

    I am a female and I am 51 years old. I had a relatively good day yesterday, although I hurt all over, just not as intensely. Hope to have a good one today too. :-)

  • catherinet
    17 years ago

    Hi lawmar,
    I'm thinking it's your journey through perimenopause. I've had a totally rough 10 years through it, and muscle and joint pain was a main, presenting symptom......along with extreme fatigue, IBS, cognitive problems, migraines.
    I've done alot of reading and talking with women of this age, and I really believe that there is a big hormonal component to fibromyalgia. On several menopause forums, you wouldn't believe the number of women who start having incredible pain and fatigue when they start going through perimenopause. Sometimes I think the problem is that we just aren't supposed to live this long!
    I think some of us are so much more dependent on our female hormones to feel good, than others.
    So I'm thinking alot of your present worsening of pain symptoms is from "the change". My pain seemed to be the worst in the first 5 years of perimenopause. It's definitely gotten better.......but not as good as it was in my 20's!
    Whether it's officially diagnosed as fibromyalgia or not, I think following a treatment plan for fibro could benefit anyone having alot of muscle/joint pain.
    I think alot of fibro people have gotten some pain relief with drugs like Elavil. The antidepressants seem to work on pain too. It's hard to get exercise and stay active when you're having alot of pain, but staying active is really important to keep from hurting even more.
    Have you tried any water exercise (in a pool)?
    I find that stretching exercises not only help with my pain, but give me energy too.
    A high carb diet, lots of sugar, and salt can make our pain worse too. I find that caffeine does also.
    Pay attention to your diet and see if certain foods make you feel worse.
    Have you had psoriasis your whole life? My 17 year old son has, and I worry about him getting the arthritis.

  • lawmar
    Original Author
    17 years ago

    Thank you catherinet. That sure seems to make a lot of sense. I've been feeling horrible for about the last 6 months. Just when I started noticing a change in my monthly periods. I just finished one after a 2 month absence. That's the first time I had gone that long without a period. I haven't had psoriasis all my life, although my 2 older sisters have. Mine didn't show up until my 30's. I am not presently on any treatment plan for that though, just my arthritis medication and that in itself seems to make the psoriasis go away. I am going to have to read up more on fibro and also menopause. I haven't done much reading in that area, but I definitely will now. Thank you so much for your insight into this.

  • catherinet
    17 years ago

    You're welcome lawmar!
    I hope that you can find some things to make all of this easier on yourself. There's lots of info out there on fibro and menopause. Good luck to you.

  • devorah
    17 years ago

    Fibro for me started with the birth of my 2nd child. I suppose that could cause the same kind of haywire hormone response as menopause.

  • catherinet
    17 years ago

    Sometimes I think fibro starts with some sort of physically traumatic event........pregnancy, childbirth, auto accident, perimenopause, viral infection, etc. But I wonder if our bodies aren't somehow predisposed to it to start with.
    I always had a lot of funky problems my whole life.......it's like my body was tuned too tightly or something. It can't take much deviation from it's normal, or it goes a bit crazy. I'm too physically sensitive to everything.

  • lawmar
    Original Author
    17 years ago

    I also wonder if it has a lot to do with stress. We live on a ranch and under a great deal of stress now, worrying about prairie fires, drought and family. I'm sure that doesn't make anything easier either. I have also been staying away from starches and sugar the last couple of days since reading catherinets post. I used to never think that I would want a hot tub, but the idea of it sure sounds good to me now.

  • catherinet
    17 years ago

    Hi lawmar,

    I agree about the stress. For me, many times when I'm under stress, I can't actually think "I'm under stress", to the point of thinking it would affect my health. But then things start happening to my body.........and I become aware that probably IS the stress. My husband keeps telling me to get back into meditation........but I'm too stressed to do it! ;)
    I have a whirlpool bathtub. The problem is, getting in and out of it!! I have to sort of do it like a seal......sliding in and flopping out!
    I'm finding that gentle stretching exercises.....especially with my legs, makes my day go much better. It gives me energy. I've also heard good things about massage therapy, but haven't tried that yet.
    Good luck with finding what helps you the most.

  • grandmapoo
    17 years ago

    My rh arthritis got MUCH worse during perimenopause, as I look back. But there's hope. After 3 yrs, I'm MUCH better now. I guess the hormones balance or the body makes adjustments. So, there's hope!

    I'm almost 100% sure, I also have fibro, but have never asked my doc, since I really don't want to know, since what more can I do to feel better? I take celebrex, prednisone and Enbrel injections as it is. I watch my weight and my diet and try to excercise as much as possible.

    Catherinet, I'm laughing (well...relating)to your description of getting in and out of the whirlpool. I absolutely LOVE warm baths, and have so much trouble with the tub now.

  • kiwi911
    17 years ago

    My mom 62 and I almost 40 both have fibro and let me tell you when mine acts up, I can't barely get out of bed, there isn't a cure and your pain and stiffness sounds alot like mine. So far mine only acts up a couple times of month and the same with my mom. My ex mother-in-law has it really bad, she has taken alot of medication just for relief, they finally put her on steriods which seemed to help alot but then she got fat from them. Its one of those mysterious things they really don't know much about, I explained my syptoms to my doctor, one simple test she used on me was to put pressure on the inside of my knees in the soft tissue, and when I wasn't having a flare up day there was still pain in that area which along with a few other simple pressure point tests she came to the conclusion of fibro. I am also taking coumadin for a clotting problem therefore I am limited on what I am able to take when a flare up starts, I have been taking darvocet for the last 2 years and even though they don't work all that great, if I take 1-2 when I first feel the pains, it usually helps some. Good luck to you, its miserable to have such pain and ALOT of doctors don't understand.

  • cheerful1_gw
    17 years ago

    I've been feeling pain above my elbows and the backs of my upper thighs. Also can't shake the fatigue. My lower back hurts to the point where I have to grab the sheet to raise me up out of bed. I'm 51, in menopause. What kind of test would be needed to know if it's fibro?

  • Pam Honeycutt
    17 years ago

    for the menopause try black cohash and soy. And for the
    arthritis try fish oil capsules and turmeric capsules.
    You can get any of these at Walmart, grocery stores or
    pharmacies. They will really make the difference.
    I went through my change at 42 and I took black cohash
    and soy for about 6 months and haven't had any problems
    since. I have bad discs and osteoarthritis in my lower back and also have regular arthritis in my hands, ankles and other joints. I was taking a lot of 800 mg Ibupropen for these but have been taking fish oil capsules and turmeric capsules for about 6 weeks and I've only taken 3 of the Ibupropen. These are inexpensive and non habit forming herbs.

    Best of luck to you.

  • cheerful1_gw
    16 years ago

    I take fish oil capsules, but may try the tumeric. I'm having lots of pain in my back and knees today, also in my shoulders. It feels like I have no grip in my hands. Going to work was an effort. I was really tired all weekend.

  • catherinet
    16 years ago

    How many fish oil capsules do the both of you take? Last year I bought a bottle of Carlson's fish oil, but I just can't swallow it. I've heard it takes a lot of capsules to get enough.
    Also.....I think its important to not take just any fish oil. There's the possibility of there being too many heavy metals in it if its not a very reputable brand.
    My FMS has flared up horribly recently......to the point of needing strong pain-killers. I've been reading that ginger capsules are good for pain. So you might try those too. But be sure to take them with food because you can really feel their spicyness in your stomach.

  • lucygoose
    16 years ago

    Hi All!!

    I go to a rheumatologist next week.....I have been hurting real bad all over but mostly in my hands. I can not close my right hand without screaming....it hurts so bad...When I wake up, it's like I can't hardly walk and I can't hold my toothbrush. Last night I got feed up with it and took half a pain pill. (Vicodin).... My regular doctor go all mad when I kept complaining about pain. I also have Hepatitis C. Just found that out last year....I had back surgery a year ago in January, almost 2 years now....and I was complaining about my belly being bloated then....well, now it looks like I am PG...A older lady friend at work came up to me one day and said *you looked PG*.....I said, *I know*.... :-(....I went from weighing like 120-125 to 140-145.....It's really not the weight, it's how my belly is.....I also have had an under active thyroid for years.....now, it is all messed up, too...I have had to change my meds 4 times.....this last time, instead of coming back in 2 months, they say 6 weeks.....Sooooo, have I bored you all yet?? LOL....I could live with all of this if only MY HANDS worked....LOL....Now I almost can't wait to see the rheumatologist. Oh, I forgot the best part...LOL...How I found out about the fibro, was I had went to my normal GP doctor and him and I got into a little disagreement. I was complaining about hurting and he was say crap like *look at your file, look how big it is, and there is nothing wrong with me...Yada Yada, Yada....* Well about 2 weeks later I came across my bill and he wrote on it Fibromylagia. I didn't even know what the heck that was.....LOL...

    How can I get up in the morning without my 3-4 cups of coffee?? I need that....LOL

    Thanks for listening.....:-)

    Good Luck to you Lawmar!!

    LucyGoose:-)

  • lucygoose
    16 years ago

    Hi!!

    I did go to the rheumatoid doctor...He took lots of blood and ex-rayed my hands....I see him in about 3 weeks for the results....Something he did say about the fibro is that it isn't in the hands....so, I might not have that after all...I don't know....I will let you all know...:-)

  • mommyandme
    16 years ago

    I definitely have fibro & I have pain in ALL the joints (& muscles, etc) including my hands. They get quite painful & stiff in the evenings. I have been doing pretty well with cymbalta & flexeril.

  • khandi
    16 years ago

    I have rheumatoid arthritis for 15+ years now. My sister and friends (2 of them) have fibro. We have a lot of the same symptoms. I don't take anything at all whatsoever! I did at the beginning but it only created more health problems for me. Nothing really eliminates the pain anyways. The drugs (Plaquenil, Methodrexate, and gold shots) only slow down the progession of the disease. It doesn't stop it and they create more health issues. Some really bad!

    It is REALLY important to learn pain management. I used to do a lot on the days where I felt good, and I would end up in bed for the next 3 days. Now, I do what they recommend. On the day that you feel good, it is important that you REST! Your body needs this rest in order to gain back its strength that it lost on your bad days. If you don't rest on your good day, your body keeps getting runned down. It needs a break to gain strength.

    Stress is bad. Certain foods are bad and some are good. Sugars gives me more pain. Pineapple has "bromeline" which is a natural anti-inflammatory. Stay away from foods that have rancid acid, such as spinach and corn. (I got this info from my naturopath several years ago.)

    The BEST thing to eat is 1 cup of wild blueberries every day. It is the one food that has the most antioxidants to kill the free radicals roaming in your body that cause damage to your cells.

    Salmon is very good too. If you don't like salmon, take it in capsules.

    I can go on and on...but will close for now.

    I know the pain can be overwhelming most times, but the way I look at it is.... it can always be worse! At least I'm alive! You do get used to it if you ACCEPT your disease. It took me 8 years! Remember, do pain management and know your limitations.

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