Migrainepage Discussion Forum
"Atten: GuineaPig or others w/ fibromylagia info"
heavyhead    |
Aug-17-01, 00:38 AM (CMT)
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"Atten: GuineaPig or others w/ fibromylagia info" |
I never spell that right *lol*
I saw in a recent post of yours GuineaPig, that you have Fibromylagia.Would you mind listing some of the symptoms for me? I have a feeling that this has been my mystery problem for the past few years...but I know little about it. Here is a list of my ills. Does any of this sound fimilar?
*getting up feeling like I have been hit by a truck, and getting up in the morning cause I am too sore to stay in bed anymore
*tired all day long. Taking hours to get out of the groggy-just-woke-up feeling
*always sore. My neck is as stiff as a metal pipe! my legs hurt like hell. my shoulders..arms...ribs...all hurt. My muscles have this deep weird ache, especially behind my knees almost the calves area.
*always getting a cold, it always turns into bronchitis (another thing I can never spell)
*of course....migraines
*ahhh depression too
*memory loss. I cannot speak straight to save my life. It's like my tongue has a mind of its own. I can't think right now, but these are a few of the things that come to mind. I KNOW there is something going on, but I am told time and time again that I am just a complainer. I am not!! But I am in pain all the time, and now that years have gone by like this...I just can't stay silent anymore. If anyone has any info on Fibromylagia can you please share it with me.
Thank you
hh
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RE: Atten: GuineaPig or others w/ f...,
leebones, Aug-17-01, (1)
  RE: Atten: GuineaPig or others w/ f...,
VickiG, Aug-17-01, (2)
RE: Atten: GuineaPig or others w/ f...,
heavyhead, Aug-17-01, (3)
RE: Atten: GuineaPig or others w/ f...,
NikaB, Aug-17-01, (4)
RE: Atten: GuineaPig or others w/ f...,
basketcase, Aug-17-01, (5)
RE: Atten: GuineaPig or others w/ f...,
Bedoroses, Aug-17-01, (6)
RE: Atten: GuineaPig or others w/ f...,
heavyhead, Aug-17-01, (7)
RE: Atten: GuineaPig or others w/ f...,
t-lee, Aug-17-01, (8)
RE: Atten: GuineaPig or others w/ f...,
heavyhead, Aug-17-01, (9)
RE: Atten: GuineaPig or others w/ f...,
t-lee, Aug-18-01, (10)
RE: Atten: GuineaPig or others w/ f...,
Tana, Aug-22-01, (14)
RE: Atten: GuineaPig or others w/ f...,
nubbyjenn, Aug-21-01, (11)
RE: Atten: GuineaPig or others w/ f...,
heavyhead, Aug-21-01, (12)
RE: Atten: GuineaPig or others w/ f...,
Steve B , Aug-21-01, (13)
RE: Atten: GuineaPig or others w/ f...,
Shiela, Aug-22-01, (15)
 RE: Atten: GuineaPig or others w/ f...,
t-lee, Aug-22-01, (16)
RE: Atten: GuineaPig or others w/ f...,
NikaB, Aug-23-01, (17)
i hear you,
heavyhead, Aug-23-01, (18)
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leebones |
Aug-17-01, 01:12 AM (CMT)
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1. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
hhyou just described me. I have not been diagnosed with fib. but have wondered for years if that is what is wrong with me. My understanding is it simply mean you have chronic pain. That is me to a t. Wish I had something helpful to say. A while back someone posted a web site about fib. it was quite informative. Good luck wendy
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VickiG |
Aug-17-01, 01:35 AM (CMT)
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2. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
If someone else doesn't beat me to it, I can post a few sites later when I get home. I'm spending the night at my parents' house so I won't have as far to drive tomorrow to see the headache doctor. I have the links at home. I once thought I might possibly have it because I have a lot of the symptoms, except for the sore body everywhere. My soreness is mainly neck up. So I have pretty much ruled that out.
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NikaB |
Aug-17-01, 02:10 AM (CMT)
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4. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
Amazzing! Have most of the symptoms, will write later
NikaB
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Bedoroses |
Aug-17-01, 08:33 AM (CMT)
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6. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
I have been diagnosed with Fibromyalgia. It has been about six years now and you do have many of the symptoms. The insomnia and inability to stay in bed is a huge one..the down side to that is sleep HELPS fibromyalgia..but of course, right? There are several pressure points in the neck, back, arm and leg area...particular neck pain is not usually fibromyalgia. It is a phantom type of pain which is also not felt in the joints. As I said earlier sleep, diet and excersise are the best natural ways to combat the devastating pain. But again, a double edged sword as often the pain is so debilitating that excersise is impossible. I recently purchased a Pilates machine which is an excersise machine that stretches, elongates and strengthens the muscles. When I am not sick with migraine or in terrible pain I do get on this and it is the BEST thing I have found for the fibromyalgia pain. I'd be happy to answer any other questions you may have as this diagnosis was as frustrating and painfull as the migraine. Another thing that helps when I can't move when I get out of bed are the moist heating pads which you microwave. I have several...heat those things up and put them on the various painfull areas and after an hour or so can start moving. I'm sorry to say but yet another insidious chronic condition. Elizabeth
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t-lee |
Aug-17-01, 02:14 PM (CMT)
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8. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
Hello Heavyhead, I've been diagnosed with fibro. and have suffered with symptoms x 3yrs. It started in my mid/upper back then lower back. I went see a chiropractor whom mentioned he thought I could have fibro. I then looked up as much info. as I could find and presented the info. to my neurologist. Every time I would attempt to start an exercise program, my back would flare up terribly. I started with a massage therapist and it would take 2 months or so to go away. As time progressed, the pain migrated to my buttocks, arms and by that time I realized I must have this condition. The pain is described as migrating, burning, spasm, aching, muscular. I went to see a Rheumatoid M.D. and he examined me explaining that to be diagnosed, you have to have 11 of 18 tender points. I also had many associated symptoms: migraines, mitral valve prolapse, irritable bladder, irritable bowel, pms, thyroid disease. He explained there is a pyramid of 3 factors that affect fibro.,and must be treated to help alleviate symptoms. These are 1) SLEEP - if you don't sleep well, or if you sleep too lightly, you don't get the deepest 4th stage of sleep needed to adequately rest the muscles. 2)MOOD - usually there is some mood problem 3) EXERCISE- yes to exercise hurts, but gentle stretching is encouraged and part of the treatment; then progressing to mild aerobic activity. This I still have not mastered. I still have not started an exercise program. water aerobics is also good. I have a pool and sometimes swimming does loosen up the muscles. This is a muscularskeletal disorder and not joint related ,although it feels like it. Now my pain has progressed to my hands, knees,and legs. I feel the exact same way you do when you get up every morning. It seems to be worse with bad weather or cold fronts. I also am very cold all the time which is not good; it is better to keep warm. The things I've found that help my pain are:
1. warm heat packs or a heating pad
2. taking freqent breaks- I am always fatigued.
I am having to reduce my working hours to
take care of myself. By the 3rd day of work
I'm hurting and exhausted.
3. For sleep- Melatonin or Ambien is usually
prescribed.
4. For mood- an antidepressant is usually given
5. For pain- exercise with gentle stretching,
Ultram or another drug like celebrex is
given, massage with a hand massager (like
Howmidic) is wonderful and is probably THE
most helpful tool for pain. I hope this info.helps you. Yours in pain,
Lisa
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t-lee |
Aug-18-01, 11:38 AM (CMT)
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10. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
Heavyhead, I wish I could tell you that it goes away, but there is currently no cure for fibro. My doctor told me I would have times of flare ups where I would have less and less times in between where I would be pain free. I have talked with many persons, my patients at work, and it seems their condition becomes more debilitating as time goes on. I used to have 3 flare ups a year and now I have only 3 weeks between flare ups; and this is with medication. I know I need to start the exercise program, but I find it too difficult. Many people have told me that exercise has saved them and made them more productive. It is the key. I feel you are right and should follow up with a Rheumatologist to get a definitive diagnosis and treatment. You definitely don't seem to be getting the sleep required and you also mentioned depression which is the mood factor. I wish the best for you!
Good Luck....Lisa
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Tana |
Aug-22-01, 10:48 AM (CMT)
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14. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
Lisa! I too have FMS and was wondering a couple of things re: your FM. What types of meds are you currently taking? I am an RN and from the way you have written, it sounds if you may be a nurse or in healthcare also?? I work 12 hr nights and it is about to get to me. Especially when I am so busy that there are no rest breaks. I have neck and shoulder spasms(among many other s/s) and it hurts badly. Have you ever tried Zanaflex? I am curious about it. I have heard of FM sufferers having luck with it. For the Migraine sufferers, migraines go hand in hand with Fibro. FMS goes undiagnosed on avg. of 5 yrs for most. For those of you who think you may have it, a referral to a Rheumatologist is the starting point. Thanks! Tana
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nubbyjenn |
Aug-21-01, 01:05 AM (CMT)
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11. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
go to your md and ask for a referral to a rheumatologist - that way you can get a firm diagnosis. doctors like to diagnose achy body as fibromyalgia...i have seen so many misdiagnosed ones in my office (I am a registered massage therapist)....you could also have Myofascial Pain Syndrome...or some other thing...how active are you?
how is your sleep?
how is your diet?
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Shiela |
Aug-22-01, 08:34 PM (CMT)
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15. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
I too have just been diagnosed with Fibromyalgia and after years of the pain and all the fatigue and everything else it weas nice to put a name to it. I am on Elival right now and it does help me sleep but I havent noticed a difference in tha pain or fatigue. I am waiting to get into a program with one of the hospitals where I am from to teach me how to live with it and deal with it. As things are now I go maybe 1 week without pain a month, it seems I am in pain for 4 weeks with pain fatigue etc then 1 week off. Not alot of time off concidering I have 3 young kids to deal with plus having to work as well. It is no fun. I suggest you see a dr and get a diagnosis and hopfully something to help you cope with it. Best of luck and Pain free days ahead.
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t-lee |
Aug-22-01, 10:35 PM (CMT)
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16. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
Hello Tana,
Yes I am an R.N. and can sympathize with your working nights situation. I would suggest you get the massager I suggested. It's a long handled hand held massager with 2 rotating balls by Howmedic. When I have neck and shoulder pain
(or pain all over), It is a lifesaver. I have not heard of the drug Zanaflex. The meds. I was prescribed by my Rheumatologist are: Ambien for sleep, which is not a benzodiazopine so you are not groggy the next morning, Paxil for mood which I also take for migraines, Ultram which is a non-narcotic pain killer. This Rheumatologist has a Rehabilitation Center in his office building and they have set up a program specific for Fibro. It includes a nurse assessment, Physical Therapy based on your present condition and needs, Social Worker for pain management techniques like, Tai Chi, Biofeedback, Visual Imagery,etc.,and 12 weeks of inservice info. and support once weekly. I unfortunately was turned down by my insurance company, even though my doctor wrote 3 letters of neccessity. I was soooooooooo angry that such a program existed to help me and maybe decrease my need for additional medication and help me cope. The insurance stated that the insurance Neurologist that reviewed my case, did not believe that the program was " STANDARD TREATMENT" but was instead, EXPERIMENTAL!!!!!
CAN YOU BELIEVE IT! You see, many doctors still don't believe that Fibro. exists. YOu know if this doctor and all the unbelievers like him, had just 1 week of the pain and resulting interruption in their lives, they would appreciate and sympathize with our pain; not believe it is "all in our head". I do see a connection with my patients' histories ,that many have either Fibro. and Migraine or Thyroid disease and one of the other. I am convinced there is a hormonal/neurotransmitter relationship. Yours in pain,
Lisa
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NikaB |
Aug-23-01, 02:57 AM (CMT)
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17. "RE: Atten: GuineaPig or others w/ fibromylagia info" |
I find it so depressing - AFTER READING YOUR ENTRIES HERE ON FM AND LOKKING CAREFULLY AT THE SITES SUGGESTED I AM QUITE CERTAIN THAT that I have practically all symptoms of FM as I have been feeling terrible for some time during those spells of total, complete exhaustion and new slleppatterns I don not understan, feeling like death in the mornings, bad stomach, pains etc.So at the moment I coming to terms with the fact that I might be suffering from this nasty condition.How terrible... I have been thinking that all symptoms were just another face of migraine, or perhaps side effects of triptans etc., but they fit the diagnosis of FM so exactly that I have to consider that this is it... I hate the idea and I am not sure how I am going to deal with it as doctors here in England are extra conservative and I am sure I will have difficulty in getting any treatmentsto to make the difference, so I will have to start most work on me, by myself, listening to your and various sites suggestions.
It is so depressing - as if I needed another disease....Or is it all part of the same thing?...
I wonder - but will go on fighting...what else...
NikaB
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heavyhead |
Aug-23-01, 12:03 PM (CMT)
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18. "i hear you" |
NikaB, I can empathize with your feelings of sadness and frustration.I too have been wondering if this is not what was wrong with me all along. After all, I used to be a champ in track and field, running miles and jumping for hours everyday. Something must be wrong for me to be where I am today. Like you, I have no idea where to start with all of this. Though I live in the states, I have no insurance. And I thought getting treated for migraines was impossible without money!! This looks IMPOSSIBLE! The treatments seem so varied, so many different meds and ways to relieve it. I cannot afford physical therapy! Heck..I can't even afford migraine medication, forget about sleep aids, antidepressants, and pain meds. I feel lost. I feel like I am dieing and people are around just watching it happen. Like I am drowning and people are watching poolside! Hey, if you ever want to talk or share experiences...just mail me.
hh
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