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Old 05-01-2005, 09:04 AM   #16
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Re: How long have you had FMS/or CFS? & ?

I was diagnosed 10 years ago.

It used to cycle but now it seems to be constant. At least the pain is constant. It is not always in one spot. As far as the fatigue: there are some days when I have tons of energy and then I try to catch up on doing the things I missed doing. The next day is not good.

I don't take any meds on a regular basis. They do not agree with me. I will take Aleve but it doesn't do much. A hot bath, a heating pad and a good nights sleep is all that helps.

 
Old 05-01-2005, 09:53 AM   #17
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Re: How long have you had FMS/or CFS? & ?

People have different degrees of fibromyalgia. Some people can make it thru the day with certain over the counter meds. Others need lortab, plus muscle relaxers, (where im at right now simply because i refuse to go to oxycontin, even tho my doc thinks id benefit from it) then there are those who are on oxy and still others on morphine. Its not that some can stand pain better than others, but that that there are different degrees of fibro and the other symptoms that go with it.

They say its not a progressive illness, BS , trust me. It might not be progressive in that you will die from it, but progress it does. I used to work full time in an elementary school office for 10 yrs (with fibro) plus teach teenage bible school on sundays plus attend church service 3 times a week and held the church treasurer position as well.
I had to give all that up ten years ago, starting with my job, slowly having to drop one thing after another because of the pain, and fatigue, the fibro fog and all the extra goodie that go along with it. Four years ago i ended up with shingles all on my tummy and around to my back. Doc said it was stress from the pain and fibro. Since then ive gone downhill. Pain has become too severe at times even tho i do my stretches in tears, i still do them. Three weeks ago, my legs, both of them gave out. They felt like they didnt belong to me. They felt like they were seperate part. Doc said it was the fibro, ran an MS test again plus other tests to make sure we werent missing something else. She has studied fibro and says it is on the rise.Or maybe more people are just finally getting diagnosed she says.

I used to feel like i was in a competition with others who have fibro. If they were doing this and that i felt i should be able to do so as well and pushed myself and when i couldnt , i felt a deep guilt and confusion and paid the price for it. After a long talk with my doc, i no longer feel that way. I do what i can, push myself as far as JENETTI can and feel good about it. I am in competition with the fibro, not with others lol. I dont embrace fibro, I never have and i never will. i didnt ask for it and i wont allow it to win over me nor will i become fibro. I will fight it till the day i die. I dont love it, like it or embrace it, but i work around it and when i do i feel like i pulled one over the enemy lol. i laugh behind its back. Ive had fibro/cfs since i was in my teens, but wasnt officially diagnosed till in the 90's. Im turning 51 this july so had it for a very long time before it was diagnosed. But i feel good that even with fibro, i worked my ten years at the elementary school and got to help alot of children, that i also had an antique and gift shop ( one dream fullfilled YEA!) for two years that i co-owned with my sis till i got too ill to be able to do much there, because of me, we sold it. Felt guilty but life goes on. Now im my parents caretakers. They dont live with me, they live 5 miles away. But with my hubbys help (he goes in to work at 2:30 pm) he drives us to their doctors appts. I do all their paperwork at my desk, medicare, pay their bills, run errands, schedule their appts, work closely (in keeping tabs and paperwork) with the pt's and home health providers that come to their home. I also do research for my sons sat morning cable tv christian talk show that runs in austin. Plus help my neice with research (computer) as well, shes studying to be a pharmacist and ohhhh the work they give them . she also works at a pharmacy so she doesnt have much time. I pull out the research, she does her papers. Fibro says i cant concentrate and my back and neck hurts, i say fine, i can take breaks and STILL get the job done and have, HAHA!
Hubby and i go to movies once in while when i feel well enough, or we cuddle up on the sofa, rent a video and relax. My whole life has changed. I wont/cant say my life has gotten better because of fibro, heck no. i want it out of my body. But i can say, i work around it, play tricks on it, get satisfaction when my body says youre too sick, its hurting too much to go to a move, i can say so what, i cant cuddle with my hubby at the theatre can i? , but i sure can cuddle with him on the sofa and lay up against him, stretched out while watching a video. and i smile, because i will say to myself, you failed fibro, THIS is much better than a hard seat at the theatre hahaha!. Fibro will always be my enemy. but as long as its here, i have free will and free will does not tire out!, besides, im stubborn as a mule, bet fibro didnt know that did it? HAHA.

 
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Old 05-02-2005, 08:48 PM   #18
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Re: How long have you had FMS/or CFS? & ?

Jennetti
Hi, having been pretty sick with FMS, I truly understand what you are saying and it can progressively get worse, I have experienced those days where you feel like you are on the death bed, where there is not one place that doesn't hurt, and you can hardly stand up, you feel like you might fall flat on your face.

This illness has been one _ _ _ _ of a ride, I bet for everyone who has it. I don't know if its a sign of the times, for there seems to be so many out there with this, that it seems like it is an epidemic in our area, how about you, do you know many who have it in your area?

My doctor that I see in S. California believes that there are underlying causes that if not treated will cause the symptoms to worsen. He looks at the blood work and addresses the issues, even the ones that are in the low of the normal range. The underlying cause for many is a Compromised Immune System causing havoc at the cellular level within the body, this includes the blood, our large and small cells and the central nervous system.

I have researched some of the viruses that showed up in my lab work, and hypercoagulation, along with the Immune system. I found it very interesting, and hope to encourage everyone to take a hold of their own future and do the same. My copies of what you can and take them into your doctor or request your doctor to check out the sites.

I hope that more doctors will become more aware of FMS and help their patients to live with hope with this.

Take care, hope to share soon, uvm

 
Old 05-02-2005, 08:54 PM   #19
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Re: How long have you had FMS/or CFS? & ?

BBL, Hi, thank you for the FYI and the welcome back...I will be in touch. I still have no brain fog!! No brain cognitive problems, I ache a bit today...I think that I over did it this last weekend...having felt soooo gooood! Plus, started the (.) today...no flu symptoms, that's an improvement.

I hope that you have recuperated from your travels?
uvm

 
Old 05-03-2005, 08:49 AM   #20
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Re: How long have you had FMS/or CFS? & ?

hi ukiah,
doin' my best. inside my mind all is lovely. the body is still what it is. good some days, tired others. i am so glad you are doing well! i spent yesterday in the fog. had to go out to do errands. thankfully there are alot of wonderful people who will step up and help when the fog leaves me with lost time. i had fun trying to get thru the day of errands. planted flowers when i got home and watered the gardens. today is a day without fog. i get to stay home and play today.
love you,
bluelakelady

 
Old 05-03-2005, 10:37 AM   #21
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Re: How long have you had FMS/or CFS? & ?

Great questions and interesting responses (what a variety of experiences we have all had)

Have had fibro since 1984, about 21 years; has worsened since serious back problems and surgery about four years ago. Been disabled for about 4 years.

Rarely have even several hours where I am not in pain. Never really thought about having several days in a row without pain.

Things that help: (somewhat in order of help)

+prayer/faith in God/the prayers of others (helps also with anxiety/depression related to chronic pain)
+pain meds (mainly provided for back pain; LA narcotics)
+elavil and muscle relaxers (doc uses diazepam [valium] due to muscle spasms)
+the encouragement of fellow-sufferers, like yourselves. I don't underestimate this; we share this "common thread" in our lives.
+sleep meds (ambien helps a little bit, sometimes)
+hot baths, stretching, ointments (these provide limited relief, sort of last resort)
+use to benefit from massages, but can no longer afford
+things that distract me (good movies, time with kids, some good laughs, a good meal with friends)

cb

 
Old 05-05-2005, 06:40 PM   #22
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Re: How long have you had FMS/or CFS? & ?

I've had symptoms of FM most of my adult life. But I also have an underactive thyroid and suffer from depression. It's hard to separate them. I was diagnosed with FM last summer when I pushed my docs for a diagnosis. Now I have arthritis and degenerative disc disease. So where do the other diseases end and the FM begin?

Lately I don't seem to have any good days. "Good" meaning pain free. But, again, is it the pain from FM or from the arthritis? I do cycle and it seems related to the weather patterns. My fibro fog seems related to my sleep. Better sleep, less fog. And, contrary to what I've read, my FM seems to be getting worse. Although, it could be my "other" diseases.

The things that help are my three time a week rehab class at the YWCA. In a pool of water 90 degrees warm. I also take diclofenac (NSAID) in the a.m. and p.m. But when I really want to feel good, I take Ultracet. It knocks out most of the pain. My doc doesn't want me on it on a regular basis, tho. I try to monitor my sleep. I know that's directly related to how I feel. If I have a bad night, the next night I take Ambien. I also take one-hour naps during the day when I can.

 
Old 08-30-2009, 11:17 PM   #23
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Re: How long have you had FMS/or CFS? & ?

I was diagnosed with Mono in 1997. So a little over 12 years I have been feeling this. Bed ridden for some time. Felt awful. Took many months to get back to a somewhat normal life from the supposed mono. However, I have never felt the same since..and years later after many doctors my brother in law (also a doctor) seemed to think it was CFS. I have been to many doctors as symptoms arise and it seems that there are no true answers. I think a vegetarian lifestyle has been the only real positive find for relief for me. Massage helps too. Pneumonia happened earlier this year and I have developed pleurisy. Very frustrating for a singer. Anyhow. I am returning to a vegetarian lifestyle now after eating meat for the last few years. I am also going to try and cut down on sugars and coffee. Try a more natural approach. Any tips on what kinds of foods to try to feel better? I am all ears.
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