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Old 04-06-2005, 11:16 PM   #1
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How long have you had FMS/or CFS? & ?

Thought I would take a talley, if you don't mind sharing?

1) How long have you symptoms of FMS or CFS?

2) The most good days in a row you have experienced? Does it cycle?

3) What treatment have you found that works?

I really want to know, this hopefully will be a positive benefit to all, thank you ahead for all who choose to share, uvmom

 
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Old 04-07-2005, 12:31 AM   #2
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Re: How long have you had FMS/or CFS? & ?

I have had fibromyalgia for about 8-9 years. I can have many good days in a row when I get good sleep and don't overdo it. Although for the last 2 years I have been dealing with back issues and only get about 4-5 hours a night sleep so I am in constant bad cycle. The best treatment I have found is excercise like swimming, something not stressful on your body. Balancing how much you do in a day and I have taken Ambien at night for about 3 years to help with sleep and until my back problems got a good solid 8 hours, and now think it is the only reason I get 4-5 hours. And learn to say NO. My personality is to help anyone who needs help. I volunteered at school etc. I learned quickly to say no when it got to be to much because it would only result in a bad 3-4 day cycle. Not fun.
Barb

 
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Old 04-07-2005, 05:32 AM   #3
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Re: How long have you had FMS/or CFS? & ?

1) How long have you symptoms of FMS or CFS?um, since 7th grade which would mean about 4 years

2) The most good days in a row you have experienced? Does it cycle?I seriously don't know. Not too many. And I don't notice a cycle, but then again, I haven't paid too much attention.

3) What treatment have you found that works? Can't answer this because I haven't found anything. Of course, my searching ability is limited because I am still under my parents and they think there is nothing that can be done for this pain...
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Old 04-07-2005, 06:56 AM   #4
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Re: How long have you had FMS/or CFS? & ?

1) how long?

I would say around twenty years it seemed to kick in around the first time i was pragnent (at 18). I had very few days in those 8 months when i didnt have a migrain, i was really happy to not go into my ninth month. and other achs and pains seemed to follow soon after.

2) Whats the longest period of good days?

well from what i have noticed that seems to depend on how meny days in a row i can get my boss to give me off.
i noticed a few times when i've had a week off such as when i stayed home with my daughter when she had the flu, by the end of the week i was feeling a lot better then most days,
however the day i went back to work by end of the day i was back in so much pain it brang tears to my eyes. I had my boss cut me back on hours so i bring home only what i need to get by. now i work about every other day.
although im still in daily pain, i dont seem to loose compleate use of arms wrists and leggs, knees. for days at a time like i used to. I was so board at home that i had her put me back on full time a dealt with it the best i could for a couple weeks, and used the money for a pc so i wouldnt go nuts sitting around the house. Im greatfull to the pc, but i dont think i could do it again, cause that was one of the worst weeks id ever had by the time it was done.
from what i understand you just have to learn your limits and not over due it.
dont know if that really answers you.


3)treatments helping?

Hmm well I just found out for sure that its FMS however Im one of those that are very very sensitive to drugs. most of them have tryed sence they have thought it might be FMS have left me with hot flashes and running to the bathroom sick the second they have hit my bloodstream. then i nomally spend the next half of the day laying wrapped in a blanket laying on the floor in the bathroom so sick to my stomach that i just finally fall asleep there, its a good thing i have a two bathroom apt. im at the point that im getting very scared of trying anymore meds.(and im already aware, of a few things ive been givin in the past for other things that im very allergic to. that have landed me in the hospital) so the idea of trying one thing after the other to get help scares me. and so far the no good results have come of it. yet at the same time you cant sit around and do nothing about it, so i guess i keep trying.

 
Old 04-07-2005, 06:59 PM   #5
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Re: How long have you had FMS/or CFS? & ?

1) How long have you symptoms of FMS or CFS? ~ 8 years

2) The most good days in a row you have experienced? Does it cycle? 5 days wooohoo, and yes, it cycles, or flares.

3) What treatment have you found that works? acceptance, respect for my own limits, modified pilates and walking, I do not take meds as for me it is of no help, so I just end up hooked AND in pain. Feverfew can be of mild help, low fat, sugar and carb diet. No msg, no dairy, no processed foods, especially meats. I guess lifestyle modifications, no cleaners, perfumes etc etc.. and of course visiting this board

 
Old 04-07-2005, 07:01 PM   #6
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Re: How long have you had FMS/or CFS? & ?

I have been official diagnosed since Mar. 2003 but was having symptoms for years before that. Have been really bad since Oct.2004

I have only about 3-4 good days in a row. The first day I can feel I'm getting better the second day I really feel better and by the third day I'm starting to cycle down again. No particular cycle this has only happened twice since Oct.before that it was hit or miss.

My treatment is Ambien and Muscle relaxers and Ibuprohen if I want to take it I also take Hydroxychloroquine for Lupus and I try to take a few vitamins (I ususally forget them)

Glojer

Last edited by Glojer; 04-07-2005 at 07:02 PM.

 
Old 04-08-2005, 08:08 AM   #7
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Re: How long have you had FMS/or CFS? & ?

I was dxed with myofascal opain 22 years ago and Fm a year later. About 5 years ago was dxed with costochondritis. Mypain has spread, my flares are coming closer and lasting longer. What fun!!!!!

Hugs to everyone, Linda
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Old 04-08-2005, 10:52 AM   #8
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Re: How long have you had FMS/or CFS? & ?

hey all,


How long? Diagnosed in 1993...have had symptoms before that, but, I think the 3 car wrecks and 28 hours of labor brought it out quickly.

The most good days? 3 days tops, I was going to just answer, good days, what are those?!

Treatment that works? For me, I have to put it out of my mind, place it somewhere else, if I think about it too much, I'll take myself to the ER for some relief, hot baths, lots of ADVIL, because I don't take anything else for pain or to help me sleep.

Most of the meds that we would take for fibro, present with way too many side effects that make it twice as hard to live, don't get me wrong, if I could, I would be on pain pills, but, I'm not.

 
Old 04-08-2005, 12:48 PM   #9
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Re: How long have you had FMS/or CFS? & ?

Let's see, I was dx'd in Nov, 2002- but I had very noticeable symptoms in the prior year..and looking back I had symptoms for at least 5 years prior, but they hadn't been enough for me to think something was seriously wrong!

Good days used to come-and be weeks at a time. But the last year I don't think I have had more that 1/2 a day where I felt good at a time.

As you can see from above answer, I, at this point, am not doing anything that is making a big difference. I do stretch , and have a hot tub so use that for a lot of my stretching. I have a big house and yard and dogs, so I try my best to do active things daily. But somedays I admit to doing more resting than activity. I do take vicoden for pain, as OTC's weren't doing anything.

I also will freely admit to being hesitant to "try" drugs to treat this. My doc tried the amitriptiline when I first was dx'd, and the side effects were bad for me...and I didn't sleep even with raised dosages...Valerian root helped me sleep better! I asked him at time of Dx for tramadol ( ULTRAM) but he thought the side effects from that were bad, and gave me vicoden. Now after 2 1/2 years, it makes him nervous that I am still taking vicoden! Well, I just look at him and say , "I STILL HAVE PAIN". I am getting a negative attitude about the medical community and this illness. I try to remain open minded to them...but I have decided that only I know what I feel and believe to be true...regardless of the diploma they may have. And until they figure out the cause or causes for this syndrome. I remain cautious.
LOL Sorry for the speech...I just got going on this today- and I have a doc visit coming up, so I am preparing I guess!LOLOL

 
Old 04-08-2005, 01:46 PM   #10
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Re: How long have you had FMS/or CFS? & ?

1) How long have you symptoms of FMS or CFS?
Have had it almost all my life ( im 50 yrs old) but wasnt diagnosed till about 6-7 yrs ago or so. Before that, it was misdiagnosed as possible lupus, growing pains when i was younger, a few other wrong diagnosis . then i was diagnosed with fibro/cfs by three different doctors within a 6 month period.
2) The most good days in a row you have experienced? Does it cycle?
am in pain 24/7, goes from very bad to severe, never really any good days per se.

3) What treatment have you found that works? after many many different meds and combinations what works best for me is a mixture of lortab taken with a muscle relaxer (soma) at the same time. I take elavil for deep sleep, and cymbalta in the morning supposedly to lessen pain even more and help with moods and energy. I also take a few other meds as per needed such as clindex for IBS when that acts up, or lorazapam for anxiety attacks. I also take long hot baths, have started pilates and walking. Am always so fatigued and in pain tho. Talking about it, or rather venting on here lol with people who understand really helps ALOT as well. I also get massages as needed.

 
Old 04-08-2005, 08:59 PM   #11
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Re: How long have you had FMS/or CFS? & ?

1) How long have you symptoms of FMS or CFS?

Symptoms for nine years. Diagnoised for two years.

2) The most good days in a row you have experienced? Does it cycle?

Three days in row is the most good days I've ever had. I don't notice a cycle except that sometimes when I have a good day, I overdo and it makes me extra bad for a week or so before it levels out to my normal pain.

3) What treatment have you found that works?

Pain meds work to take the edge off the pain but not enough for me to walk without my cane. I take trazadome for assistance in sleeping and usually can get 4 to 5 hours a night. I also take a variety of meds for my IBS, meds for anxiety and depression. Nothing really works well but it works just enough to keep me moving.

The greatest thing that has helped me is the acceptance of FM and CFS and looking for the good things in life. I guess I'm just trying to make the best of my life that's left and realize how very lucky I am to have the support and help of my family. I know that many people are so alone and have to cope by themselves with this DD.

 
Old 04-10-2005, 08:51 PM   #12
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Re: How long have you had FMS/or CFS? & ?

Thank you to all who responded, I basically was looking for others who have found treatment that works?*!* And hopeful that your sharing gives all of us some tips and encouragement and maybe new ideas that we may not have thought about in our journey with FM/CF.

Those of you on or tried Guaifinesin- Has it worked for you? Is it hard to be consistant with label reading? Has taking it caused a recession of all symptoms? Has anyone gotten through far enough to be just on a maintenance program with it? Are you taking are doing other things with the treatment protocol? Or just on Guaifinesin?

This is my response to the questions:

1) How long have you had FMS/ CFS and/or ?
I thought it had started in October '03, when I became so ill. However, now I know that I have had CMP since an young child and FMS symptoms off and on over the years. Tho, the actual diagnose for FMS was May '04, for CMP was September '04; and for FM/CF was November '04.

Thought I'd add this to #2:
Definition of good day for me is minimal pain or none, lots of energy to where I can smile and laugh almost feeling like my old self, and no brain fog to deal with most of the day

2) The most good days in a row you have experienced? Does it cycle?
and
3) What treatment have you found that works?

(I realized that I answered both together.)
After treatment was started in May by pcp, I had 1 maybe 2 days in a row in a month, then it went to no good days again.

In November '04, I started seeing a specialist, after the first treatment there was 4 good days in a row, then in December after treatment, I had another 4 good days. After traveling to Southern CA for Christmas I came home sick with a bronchial illness that kept me down through mid January.

So, from December '04 into February '05 I had no good days, just bad or worse. Due to this fact, I made an appt down with the specialist, where lab work was done, to see what was wrong.

In March, thru a phone consult with the doctor the results of the lab :a Compromised Immune System and along with several Infectious viruses in my blood. Started treatment of antibiotics, anti-fungal and Heprin on March 17th, my first good day was April 1st, I over did it, and stayed up too late, so the next day I spent in bed. Sunday I felt a bit better, then last Monday through today have been my best days since I October of '03!

That has been 7 good days in a row, first I want to praise God, second I praise the doctor and staff, too.

Also what works for me was being deligent in changing my diet, eliminating processed sugar, flour, starches, processed food and preservatives. Having physical therapy, 1 to 2 times a week with massage therapy, pool therapy, learning relaxing technics, and proper breathing technics. Also joining a support group.

Does it cycle? I had heard the term used, so I put it out there...
I have heard it used in St Armand's Book on Fibromyalgia and Devin uses it in regards to the CMP. I only have experienced cycling with regards to CMP, with the pain that comes with it. Through different times of the year and hormonial.

Through your posts, I see such a need for more doctors to become equipped to know how to treat and help with this illness, and I see the sadness of not finding relief, yet. Please, don't give up, please keep searching for what will help you to feel better.

I see the doctor on the 20th, again and am hopeful to have continued feeling better then I have, I will let you know as I continue the treatment process.

So sorry this is a long post, uvmom

 
Old 04-12-2005, 06:00 AM   #13
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Re: How long have you had FMS/or CFS? & ?

1 year on April 15th.

3 weeks, usually cycles with the weather and with my emotions/stress.

Prayer. Neurontin for burning, Percocet for myofascial pain and flares, Wellbutrin for depression, concerta for short-term mem loss. Flexeril as needed for sleep, but have been sleeping ok lately. Chiropractor visits where he does myofascial release and "pops" my spine, whatever that is called. I go once a week and also to an art therapist for counseling for chronic pain. She worked through the grieving process with me and now we just talk about whatever. I would not be doing as well as i am without a wonderful pain mgmt doctor and physical therapy that I now have only as needed. My mood plays a big part in my symptoms. I I am also unable to sit on hard chairs or task chairs without my shoulders and neck getting painful which can also cause a flare. I try to sit up straight and I sit on my balance ball alot. My goal is to start a walking program.

Right now prayer and the chiropractor are making the biggest difference.

 
Old 04-30-2005, 04:09 PM   #14
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Re: How long have you had FMS/or CFS? & ?

Thanks to all who wrote, no one has written yet with positive results using Guaifinesin, if anyone knows someone please have them share...

I have great news, I am on my 12 day feeling great, my doctor found the underlying problem of FMS for me and the treatment is working!

2005 is the year for FMS and CFS, I believe that they are close to finding the true culprit of this illness and it will become a desease that is treatable, not a phantom syndrome that it appears to be.

Please don't give up, keep updated on the ongoing medical advances out there and share the info with your doctors.
uvm

 
Old 05-01-2005, 08:34 AM   #15
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Re: How long have you had FMS/or CFS? & ?

hi ukiah girlfriend,
glad you are feeling better.
i started this facinating, mind opening journey over 10 years ago. i have had entire months of feeling good. i attribute it to fresh air, exercise and attitude.
i balance diet, western medicine, eastern medicine, and herbs. i am cautious about the words "cure" and "cause".
this is a good thread. well done little sister. i am pretty sure i am open this wednesday if you want to call or come over. we resume group on may 15th. hope to see you soon.
peace and love,
bluelakelady

 
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