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Fibromyalgia Community
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Avatar universal

I am firobed out!!!

Hi PlatletGal  and other sufferers from fribro. I have about reached the end of my rope. 20 years of a non-progressive
medical problem and I have been informed by my doctor that I have severe fibro. HE SAID THAT ONLY A VERY SMALL NUMBER OF SEVERE FIBROS HAVE HANDS THAT CLAW UP FOR 3-4 DAYS STRAIGHT AND I AM ONE OF THEM. If not progressive why has it gotten worse for twenty years? Flexeril, Neurontin, Lyrica and even hydrocodon do not relive pain very much. He even had me take Neurontin and Flexeril together at night and pain bad enough I couldn't sleep well. As for flares I hurt 24/7 (badly enough to really limit my activity) but sometimes get so bad I can't get out of bed (guess flare is when you can't get out of bed). Then I am really in the soup as being in bed makes muscles and even skin hurt. I hope ya'll are doing better. My prayers are with ya'll. I still think it is progressive only they won't tell us for some reason.
10 Responses
Avatar universal

I haven't been diagnosed with fibro, but I may have secondary fibromyalgia. My primary diagnosis is CFS.

Have you been tested for lyme disease ? The reason why I ask is because I know that people who have lyme and haven't been treated... often have trouble with their hands and even feet clawing up. Lyme disease testing isn't always accurate. I hope you've been tested and more than once.

Keep the faith, Monkeymill. Dr. Garth Nicholson will be here on Monday to answer questions. I am asking people to send me a message with their questions beforehand so that he will have time to answer. I hope that you will take advantage of this special opportunity and maybe he will have some suggestions for you. I also hope that you will check out "treatments for fibromyalgia" that I recently posted on the Health Pages forum  (check out Health Pages... located to the right of your screen).

Hugs,

PlateletGal


Avatar universal
No I have never been tested for lyme disease that I know of. Will check with Dr to find out tho. Thanks a lot. I'm trying to keep the faith but the fatigue with the pain is hard to bear. Have trouble walking, sometimes have to crawl up the stairs on my hands and knees. I can't even stand at kitchen counter and peel two cucumbers or potatoes before hands hurt, lower back hurts, and get so weak I have to sit down.  I will try to stay upbeat  as I can. Hope you are doing better. You could ask him about any special meds for people like me who have fibro, OA, restless leg syndrome, Peripheal Artery disease, and sciatica. Thanks and bless your heart.

Internet hugs,

Monkeymill
Avatar universal

Hi Monkeymill,

If you can... please send me a private message of your questions for Dr. Nicholson. I highly recommend checking out his website first, because he has treatment recommendations on there for those of us who have these syndromes and autoimmune conditions. I'm on one of those pathogen killing treatments myself and making progress. My only complaint is that they can make you feel worse and that they take years, especially for CFS patients.

To find Dr. Nicholson's website, please either google "Dr. Garth Nicholson" or "The Institute of Molecular Medicine" ---- it should be the first website that is listed. Dr. Nicholson also has a lab that tests for various bacterias, etc.

Keep the faith.... I know you are suffering, but I have high hopes that there are treatments that can help you. I think you have options (options is one of my favorite words... so is "temporary" ; ^ )   )

Hugs,

PlateletGal
639869 tn?1223071102
I don't know how you feel about narcotics but I went back to using the duragesic patches for the pain. It has helped me alot with the pain but I am tired more often but I can deal with that a lot better. You are supposed to changed the patches every 3 days but some patients like me have to change it every two days. You need to work with your doctor when you start on them. Honestly I wish I didn't have to be on any narcotics because I don't like the idea that I will go into withdrawal if I am not weaned off of them and it is a very scarey thought.

Mary
Avatar universal
Mary,
Thanks for your input. I do not not want to take narcotics if I can help it. Dr offered percocet but it lasts only 4 hours and puts me to sleep.  The patch sounds good but I am so weak and tired all the time now but I don't want to get more tired. Any household activity tires me out so much. Just to unload dishwasher takes me 3 times because I have to sit and rest between tries. Also due to other meds I have to be careful what I take. I think part of my problem is I am on 4 meds that cause fatigue, reduced mental alertness, sleepiness &  depression. But I will talk to dr about the patches and see what he thinks. Thanks so much.

Monkey1mill
Avatar universal

Hi Monkeymill,

Have you checked out the Health Pages in this forum ? I recently listed a variety of treatments for both fibro & CFS... recommended by the experts. I also listed pathogen treatments. The treatment that I'm on covers both lyme and mycoplasmas. Dr. Nicholson could talk with us more about that.... many CFS & fibro (I believe the majority of us) have mycoplasma infection. These pathogen killing treatments are intended to treat the disease and not our symptoms. They will make you feel worse and they can take a long time... but, in my case, I'm seeing improvements along the way.
553995 tn?1332018840
Two things, first I'd like to say that when people like us, who suffer as we do with Fibromyalgia have pain it is real, deep and constant.  I take zydone and soma  which helps me. It helps me to be able to make dinner or even get out to dinner.  I was incapable of functioning the other day, my legs hurt so bad, my neck and head were frozen with pain but I had to get to my gown fitting for my daughter's wedding an hour from home, my husband drove.  Zydone and Some saved the moment.  There is not a thing wrong with having these meds on hand to get through the times we hope to cherish.  Zydone actually keeps me awake, where when Soma taken by itself would normally put me asleep.

The second thing is the National Fibromyalgia Assoc. is putting a magazine out that will be on magazine stands in CVS pharmacies starting next week.  Here is the info :
http://www.fmaware.org/site/News2?page=NewsArticle&id=7673&JServSessionIdr001=98u02l1zb4.app8b
642304 tn?1242606724
MEDICAL PROFESSIONAL
Response from Prof. Nicolson:  When we encounter patients with extreme signs and symptoms of FMS, we usually conclude that there are several problems that must be corrected.  At our Institute we concentrate on the multiple chronic infections that are found in FMS, and we have published that extreme cases always (so far) have multiple, systemic viral and intracellular cell-wall deficient bacterial infections.  These patients are complex and require expert care, and their infections have to be treated.
Avatar universal
Thank you so much for your answer and help. One more question. I see a rheumatologist for my fibro and neurologist for strokes and PAD. My neurologist does not treat for fibro. What kind of Dr do I see for tests for infections that could affect me?
Avatar universal
Hi..dont despaire just hang in there. I have been diagnosed with fibromyalgia only in the year 2000, but have lived with with "unofficially" diagnosed since the age of 17....so i have been in constant pain 24/7 for 38 yrs.  I also have spinal stenosis in my neck and lower back with 3 discs in the neck herniated pressing on nerves, and 2 in the low spine. I have been at my wits end as well, even contemplating an overdose of medication at one stage in my life. It was so severe last year, I was bed ridden for 7 months and could not walk from pain. Headaches, joint pain all over my body, stiffness that I could not walk, memory fog, sensitive to weather and rain, fatigue, depression, body aching like a train ran over me and i lived.....and even my skin hurt so much, i could not even touch my skin for almost 7 months. It hurt to take a shower. And yes, its like a catch22....if you stay in bed, you get more stiff....if you get up and walk around, you are sore. Mine has progressively gotten worse, and I was diagnosed n 2000 with severe fibro, stage 4 pain, and was put on a disability pension as my Rheumatologist called ma "functional cripple".  Now, after almost a year in bed, I can walk and on a good day go out to the store...but i cannot do my shopping, cannot lift anything heavy (and a shopping bad is heavy for me), cannot do housework, cannot walk for more than 20 minutes, cannot sit long, cannot stand long, cannot lay down long, have not slept for more than 4 hours a day or nite for 7 years, and am in constant pain. Have cried myself to sleep from pain, have tried a host of painkillers and a host of different types of treatments like accupuncture, hydrotherapy, etc etc etc....and i do find that sleeping packed in dry ice does help. It just numbs the pain. My doctor told me that I too was one of the "exceptional" people who has it severely and is getting worse, and he could not even touch my skin without me moaning. Hot showers, massages, ice packs, rest, relaxation, meditation, things like that do help. I have given up. I no longer seek help. I just try to get on with my life the best I can. I have been to pain clinics and pain management courses with no avail. I just have that type of body that nothing seems to help. So I am writing you this to tell you not to give up and to have a POSITIVE attitude, as that is everything. I get on with my life, and do the best I can. One thing that helps me make it throught the day is my faith, and also thinking that there are people worse off than me. And if I can help someone with even one word of help, then that just might be the one word they need to hear. Pray and meditate. And go ahead and cry. I have cried myself asleep numerous nights, and then somehow the angels seem to give you that little bit of strength to carry on. Some treatments work for some people, some dont. If you and I and anyone else are the ones that it doesnt help, then rest your body and keep positive. This is all I can tell you, as I have spent years & years trying to find help wtih no avail. And when your depression get you to the point of suicide, its time to take a step backwards and re-examine your priorities and not let it get you down. Keep positive.
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