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  • TDS Moderators: AlphaMethylPhenyl | paranoid android

Anyone have Fibromyalgia?

ohhh
yeah, im familiar with that.
sorry to hear,,, did you read in the current events thread, about the stem-cell tranplant and HIV/AIDs, theyve been working on this with other AID/O's, but i guess when straight for the big-dawg.

did they do a chromosome check?
what are your WBCs at?
nodules or rheumatic fevers??
what are you, like 26-27?

please, please dont let them talk you into a Remicade infusion...
~~~~~~~8-X ;-)

in the pines...
 
I wish I was back in my 20's again. I was diagnosed when I was 25 and that was after 2 years of fighting them (the medical world) that it wasn't all in my head. I am going to be 41 next month.

I don't take anything for inflammation. I only take medication if it is absolutely necessary.

My blood work is normal with the exception of my thyroid (I have hypothyroidism too). And, I had a 4th month miscarriage like 2 years ago and I do believe they checked my chromosomes for any abnormalities.
 
right, no time is good..

but late 20's, with a grad. degree, or a break in a career, family growth, a moral compass... and then BOOM.
sorry, thats all gone now.!
whaaat?!?

ineteresting
32? lol
seronegative spondoatrophy
reactive arthritis; AS, Osteo etc
leukocytosis, anemia(plunges then regulates)
auto immune gastritis, reitz's? chrons? ???
constant adverse reactions to medications, recently added albuterol...(adrenal gland issues heh)
ive checked hyperglycemic the last few times, and i hope i dont decide to go pre-diabetic, hyper or hypoglycemic again,.
lots more fun im leaving out.
yay
lol


i have 'mmj epsom salts' for a very nice bath, zero cerebral effect, perfect muscle, cns effect...
oh so worth it.

sorry,. saw info so i grabbed it.
 
Sorry to hear of everyone's struggles.

It took a long time for me to get formally diagnosed. I had to see a (very expensive) immunologist and have a full panel of blood work done to rule out anything else. Everything else was ruled out once the blood work came back - including diabetes.

Once he started hitting the pressure points (which placed me in BLINDING pain) it became pretty clear that it was not psychosomatic. I have depression, PTSD, panic disorder and a handful of simple phobias.

For me, diet, exercise and most importantly resting enough has been the best thing ever. Cannabis is not for everyone, but it is a recognized treatment in the places it is legal. It does do a good job for my pain management. I've been clean from pain pills for way too long to start anything like that again.

I'm told to quit smoking (cigarettes), eat well and exercise, drink enough water, and RELAX. A couple people in my life received a very harsh explanation that fibromyalgia is a real condition that affects many. If I say I am not feeling well enough to hang out or whatever, I'm not malingering.

I have a friend who is a paramedic and thinks the entire thing is an excuse. Recently we were playfully fighting and he grabbed one of my pressure points (the one that is #14 on my upper shoulder). Diagram here - probably work safe but maybe not, so be careful. I screamed bloody murder. My joints are still cracking but I feel fine, just tired.

I recommend that anyone who suspects they may have fibromyalgia to see an immunologist and a chiropractor. Those were the people that told me I was not crazy and that I can live a perfectly normal life - that fibro will not kill me. I haven't really missed a beat since then. I've stuck with my diazepam regimen (for panic/chronic anxiety) which does relax my muscles. Pilates and yoga have also helped.

Chiro hooked me up to a TENS unit and I made her take it off in under a minute because it felt like bugs were crawling all over me. We went back to ultrasound and as long as I can do a power nap after 3 minutes of full-back ultrasound (it wears me out!) it reduces the symptoms for about a week. :) TENS does work for a lot of people. For me, ultrasound works better.

Wishing all affected by fibro the best. It is not in your head.

I am alive... and very much kicking.
 
'posa good to see you are not taking pain meds. And, I have lost many friends over this illness. So I can relate.

If I may ask, how old were you when you were diagnosed?

It is funny how all these people can have the "same illness" but yet experience it in so many different ways. My trigger points do not kill me, they hurt. But, my muscle ache like I have the flu and I am always running a low grade fever (99) and it feels like there is someone in the floor pulling me. Feels like I have gravity boots on and I can barely hold myself upright.
 
hey guys

I have really sore tight muscles and sometimes I get cramps if I do repetative stuff especially in my hands, if I bump my arm somewhere it feel like its going to cramp up it feels like the mucsle goes into a little ball at the place i bumped it. Even if I stretch which is painfull the muscles return back pretty quick.

I have always wondered if this was fibro

do any of you have this symptom
 
im sure many people with and w/o fibromyalgia do, its as you have seen, very complicated to diagnose, and then be treated, so finding a knowledgeable MD would be the only real answer...

should i say, doctor or maybe 3?!?
 
TINK said:
'posa good to see you are not taking pain meds. And, I have lost many friends over this illness. So I can relate.

If I may ask, how old were you when you were diagnosed?

It is funny how all these people can have the "same illness" but yet experience it in so many different ways. My trigger points do not kill me, they hurt. But, my muscle ache like I have the flu and I am always running a low grade fever (99) and it feels like there is someone in the floor pulling me. Feels like I have gravity boots on and I can barely hold myself upright.
Click to expand...

I am 30. I was formally diagnosed at age 30, earlier this year. I'm going to be in a non-medicated study next month. I'll post the results when they come out, which will not be for awhile. It's through the medical school here.

Anyone who judges me over fibromyalgia or anything else doesn't stay in my life for long. Most days I am absolutely fine. The days I am not, I just need to be left to rest.

The trigger points are the basis for diagnosis. They are likely to provide the proof that yes, this is an immunological disorder. I have a theory that there is an adaptive basis behind fibro.

I understand the gravity boots thing. That doesn't generally happen to me. It's the freakin pressure points in my case! It sucks, but it is what it is. It is not limited to one region, but a full body consideration. I sure do get upset about it, but I manage.
 
I have been daignosed with it also. I am on methadone and it takes care of the pain 90% but if I could do it without drugs I so would. I am now dependent on methadone and if I stop my pain is too much to handle. If I would choose again, I would do everything in my power to not take opiates for pain. But a year ago I was too weak and too desperate to continue living in pain so I chose methadone. Didn't want to and was tired of looking for a doctor who would prescribe me meds I need so I went to a methadone clinic and said I was addicted. I did use opiates occasionally at that point but was not physically addicted. Bad move, but brings me complete relief and lets me live life. I am happy to be on this med but feel bad about being dependent on it.

I know the one thing that makes a difference for me is diet. When I eat only veggies, fruits, meat and fish I feel a lot better. When I eat everything I feel like shit.
 
Z Y G G Y said:
I have been daignosed with it also. I am on methadone and it takes care of the pain 90% but if I could do it without drugs I so would. I am now dependent on methadone and if I stop my pain is too much to handle. If I would choose again, I would do everything in my power to not take opiates for pain. But a year ago I was too weak and too desperate to continue living in pain so I chose methadone. Didn't want to and was tired of looking for a doctor who would prescribe me meds I need so I went to a methadone clinic and said I was addicted. I did use opiates occasionally at that point but was not physically addicted. Bad move, but brings me complete relief and lets me live life. I am happy to be on this med but feel bad about being dependent on it.

I know the one thing that makes a difference for me is diet. When I eat only veggies, fruits, meat and fish I feel a lot better. When I eat everything I feel like shit.
Click to expand...

I don't know how long you have been diagnosed or how long you have beed on pain meds. But, the reality of the situation is, you will never be cured. I don't know how old you are either, but at some point you will have to stop taking opiates. Your body will get to a point where it can no longer handle it and cause organ damage or you will end up with opioid-induced hyperalgesia or opioid-induced abnormal pain sensitivity. Which is what I realized I had once I stopped the opiates. I still have the pain, but no where near the intensity that I had while I was being medicated. I also noticed that not having to worry about if I had my pain meds and when my next refills were and all that stress was gone, I felt better both physically and emotionally.

Good Luck!
 
Z Y G G Y said:
I have been daignosed with it also. I am on methadone and it takes care of the pain 90% but if I could do it without drugs I so would. I am now dependent on methadone and if I stop my pain is too much to handle. If I would choose again, I would do everything in my power to not take opiates for pain. But a year ago I was too weak and too desperate to continue living in pain so I chose methadone. Didn't want to and was tired of looking for a doctor who would prescribe me meds I need so I went to a methadone clinic and said I was addicted. I did use opiates occasionally at that point but was not physically addicted. Bad move, but brings me complete relief and lets me live life. I am happy to be on this med but feel bad about being dependent on it.

I know the one thing that makes a difference for me is diet. When I eat only veggies, fruits, meat and fish I feel a lot better. When I eat everything I feel like shit.
Click to expand...


I faked addiction to get suboxone for some chronic pain stuff, more power to you. You gotta do what you gotta do to survive. I like suboxone more than methadone personally.
 
well another day another surprise.... I woke up this morning not able to walk upright and from the top of my head to my tail bone is killing me. It's funny, whe I used to wake up like this, I would pop a few (5) norcos and be one my way. Now, I lay on a heating pad and it feels better than any high I have ever had. After this I will get up and stretch out and try to get moving. The worst thing is to give into the pain and just do nothing. You have to push through it. Not to the point of exhaustion, but to a point where your body is somewhat functionin normailly. I am completely alone here. My closest family member is a 5 hour drive away, and my only "friends" are co-workers. So basically, I have no choice but to push on.
 
I've had it. I got diagnosed a year ago, but have had the symptoms since I was 18 years old. it's been 4 years and 1 month and counting and it's been a true bitch, quite an insane ride of pain. I'm truly just getting sick of it. It's hard not to get depressed and agitated, i've developed severe mood swings from it. I sound like a little bitch, but I have much more than what doctors believe this so called "fibromyalgia" is. I think it's real, however my body hurts and burns everywhere. Muscles hurt at random times, bones hurt, vision goes blurry, numbness that keeps getting worse, headaches everyday, severe eye pain, ears are clogged, i can't smell nearly as good as I used to, nausea at random times in the day, hurts to take a piss, neck and back aches, arms hurt, hands hurt when lifting heavy things, my muscles lock up and spasm, i now have irritable bowel syndrome, my balls even hurt, yet nothing is wrong or can be found. i can't even smoke weed, a cigarette, drink without it affecting me horribly. it all makes my pains flare up or makes me nauseous. It sucks ass, and it is not something anyone should be dealing with. The hardest part about it though, is the lack of support I get from my family. They see me mobile and not crying in pain, so they think i'm okay. I haven't worked in 4 years from it, and i'm just trying to find some relief. I've tried reiki, yoga, meditation, acupuncture, natural herbs, gym, cardio, eating good... it only reduces it so much. It truly is a lot of work as well to do for so little relief.
 
I have had fibro since i was in my 20s so I have been living with it for a long time, I used to get shots for the muscle that is torn in my shoulder, that was 1995 when it happened, And from that point on I have been on every pain med you can think of, any anti-Inflamatory, and muscle relaxers. Every day I dont want to get out of bed I have to, I have to take care of mom so I dont get to stop going untill the afternoon, its a routine I am on, I get up early like 3-4 am my time take 3 percs and 2 valiums My tolerance is quite high since I have been taking meds so long, I get my blood done every 3 months to make sure that my liver is functioning well, and I see my Rheumatologist every 3 months to get my scripts. Its just something that you have to work with in your life I hate it i wish I could give it back or wish it never happened, to be like normal people who can get out to do things or be a happy person but I dont feel like that anymore, the pain was nothing when I was young but now I feel like 80 when I am 42, Heat works the best for me, it first started with a heating pad on my shoulder and spine untill I burnt marks into my skin on my back, I have to burn it to make the pain go away.I just use that and my meds most of the time and I smoke weed that totally helps me allot with this pain, it wakes me up every morning and its the last thing I feel before I go to sleep. I have no use of my hands anymore, and now I have 2 other types of arthritis also my bones dont bother me just my muscles I have bad days too but I cant afford to have them, the way I explain my Fibro it feel like hot electricity and barb wire are wrapped around all my muscles in my body I have some tremor in my left hand but trying to ignore that its new. I will always be a ~*Prisoner of Pain*~. Its all I know
 
I've also had fybro for a good decade or so - and it's got worse not better. Many rheumatologist's (mine included) seem to be taking this increasingly dogmatic view against analgesics for fybromyalgia - saying they flat out don't work for the disease. Now exploring alternative routes might be all well and good if u've got a support system, plenty of money and don't have a life to lead.

But to function on a day to day basis (ie not be stuck in bed all day) when I'm a full time student I need pain relief, tramadol and codeine seem to work for me - OxyContin only in very severe instances. I know my rheumatologist is very unhappy with this and would rather I explore the other routes ie - exercise, psychology, trycyclics, beta blockers, but I simply don't have the time, nor inner strength to do this.
 
Hey anyone else have this god forsake bullshit and its making them hate life?
Click to expand...

yes! ive had this for ten years i and its had a bad impact on my life. ive never been able to hold down a job or keep friendships. the prospect of living my whole life this way is so depressing and sends me into despair sometimes. i try to stay healthy with cycling i think that helps a bit with the pain but im always longing for some kind of pain relief. maybe some day they will find a cure for this shit hopefully soon though.
 
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