Just diagnosed w/ fibromyalgia..

[dizzygirl]

Hey all... sorry i have been away this week!! This has been the week from h***!!

My pain is just like unreal this week.. and potsy flares are just as bad!!!!!

Any it resulted in mutliple dr. trips this week and lots of pain meds...

My doc thinks that I have fibromyalgia...as she cant figure out the casue for my legs pain.. and all the other pain that I get...

I have my doubts though.. I think that I have fibro... but I dont think that it is the casue of my leg pain.. I am not having muscualr pain in my legs... the only way that I know to describe it.. as I have said befoere.. my bones just feel like they are going to break in a million little pieces at any momnet..

there are just so many factors going on....

Though on the other hand.. fibro does explain SOME of my pain.. in regard to the all over aches and such.. and the pain from head to toe.. hm I dont know..

I have a feeling that the DX was given b/c the doc does not know where else to turn or look.. I'm not dr. bashing...as she has been great at looking into things..

But I cant help but think and feel that we are mising something important.. in regards to my over health.. aside from all the issues..

like before i got dx w/ pots and "they" kept telling me that it was all in my head.. when in reality... my ANS system is all wacky!.. I knew then and I know now..

I know that if anybody understands what I am saying or trying to say that is.. it will be you guys..

Ihave been on anti-inflammatory after anti-inflammatory.. since I was about 12 yrs old.. and they dont really offer relief... wouldnt at least one of them dont something if it was all fibro realted??

((((sigh)))))

thanks for listening to me ramble on and on guys!

[Ernie]

Hi Linda,

I am sorry you have fibromyalgia. I don't think I have it but I know personally of some people who have it and I know it is very painful. I hope the doctors will find a medication that will help you control the pain.

I feel the same pain in my muscle: that every cell will fall apart or explode. I just can't wait to find the cause.

[Guest Julia59]

Hi linda!

I wish I could help-----I at least wanted to send my support.

All this stuff is so confusing--isn't it?????????????

Our heads are always spinning trying to figure this stuff out.

I was just diagnosed with fibromyalgia and CFS at the Cleveland Clinic----and they believe it's in addition to my POTs and other spinal issues.

They were not convinced that all my pain is spine related---nor were they convinced the fatigue was related either. They thought the fatigue and weakness was more systematic----and also believed the myelopathy was caused systematically---and not related to the cervical spine stenosis. They thought surgery was NOT needed at this time----but they are taking a closer look at the cervical/cranial instability in which they think it may be due to the EDS---which was also confirmed from the CC.

I don't have leg pain like you------but I have known people with fibromyalgia who have had terrible leg pain. Maybe you can have them take a closer look with x-rays or a C-scan----before they blame all your pain in the legs on fibromyalgia. My legs are the thing that hurt the least----but I have terrible leg weakness---and some numbness.

Anti-inflammatory meds won't work for fibromyalgia pain from what I have heard.

I know a lot of the time---Docs will just diagnose that if they don't know what else is wrong----but many people do have it combined with autonomic dysfunction.

At first I was sceptical---but as I learn more about it---it does make some sense. In addition---the Cleveland Clinic has a good reputation.

I think you have a lot more going on then that (fibro) though---and i'm sure your spinal issues are a lot more serious then mine are---and I think you need a thorough workup on your spine and lower cranial area to rule out anything terribly serious. And MRI---a CINE MRI---where they measure spinal fluid flow----and a C-scan with contrast. I think you should go somewhere like the Cleveland Clinic---or Johns Hopkins.

I wish I could help you more----but this is all I can come up with.

Take care----see you soon! Meanwhile---i'm sending HUGS----->

Julie :0)

[morgan617]

I've had fibro for 30 years. I read an interesting article about the tie in between fibro and the ans. I will see if I can find it. I do not always have pain in muscles, it can really feel like it's in the deepest part of my bones, but like you, I'm not convinced it's a fibro thing.

Have they done a bone scan? It's pretty simple and no drugs involved, just a radioactice tracer that doesn't have any side effects. Not sure what else to tell you. I have just lived with it and never actively persued any treatment. Some days are so bad, I'm ready to try a narcotic, but I never take pain meds and just don't want to go down that road. I can't take nsaids, because of gut problems, so just have dealt with it. But I do understand how chronic pain can totally wear you down.

The one thing I would advise, is if you go to a new doc, don't mention it. Fibro is very real and very complex, but most doctors will not even see patients if they initially put it down as a diagnoses! There is not one rheumy in this town that will see a patient for fibro and it's a rheumy problem!!! Just a heads up...morgan

[dizzygirl]

thanks guys!!

I was just reading a thing from the mayo clinic on fibromyalgia.. some of it sounds just like me... and while reading it said that I believe one of the causes of fibro is ANS dysfunction.. so maybe it isnt so far fetched...

It just kinda bugs me that there are so many things that go wrong w/ ANS stuff.. fibro.. you name it!

WOW!

[dizzygirl]

Morgan...WOW! fibro for 30 yrs huh? that bites big time!

Hmmmm.. why doesnt it surprise me that docs dont take fibro seriously either!!!

Jimminy-Crickets!! what is wrong with people! (dco people)

I have found that they only thing that really gives me some relief is Toradol.. by IV.. along with some other pain relief goodies....

that and about 20 hours of sleep a day.. geez.. latley I canbarley hold my eyeballs open!! so freggin' tired!!

ok rant over....

[morgan617]

Linda, I think I got this site off here from someone else, so credit goes where it's due, but not sure , anyway, really bad at computer stuff, but will try and paste

http://www.martinez-lavin.com/Fibromyalgia.htm

Aha it's very interesting......duddududududumorganza

[Sophia3]

Sorry to hear about the fibro dx. I feel it is another real illness though "wastebasket' dx where it's underdiagnosed in some who REALLY have it.... and over dx in pts where the doc just can't say "I am not sure what is causing your pain". FM is based solely on the 'tender points' but can also cause general acheyness in my hands that feels like CHRONIC arthritis, 24/7 though bloodwork and x rays are normal. Or so my current doctor tells me.

FM or fibromyalgia USED to be called fibrositis. Some debate it's a neurological problem as opposed to rheumatological problem. all I know is it hurts and most meds do no do squat. Sitting in a wooden chair for more than a few minutes, causes delayed pain that feels like knots all over my back. Massage therapy causes SEVERE DISTRESS. My sister is a massage therapist and can only due light cranial work on me.

I was first dx with CFS 20 years ago (back when it was called chronic adult mono) and then the pain became an issue in the early 1990's and a huge problem in the mid 90's. A sleep study for sleep apnea (to explain my horrendous exhaustion) showed I had severe alpha =intrusion sleep.

Nutshell, I get very little if ANY restorative sleep. so as time goes by the "fibro" gets worse. My 8 hours of sleep is like somebody else getting 3 hours sleep...Many people with fibro have poor quality sleep and in those pts, our pain would improve if our sleep is improved. But sadly, for many of us that isn't possible. You can even take a healthy person, wake them during restorative sleep and in time THEY can develop FM or so studies conclude.

I have sensed learned -only in recent years, POTS can cause sleep disorders of which there are many including chronic insomnia (UNRESPONSIVE to exercise, 'general sleep hygiene' and JUST get up at the same time and it (insomnia will improve) Many of us have circadium rhytms out of balance.

I tried the FM aka fibro "CURE" of a GHB study and I had no improvement. A couple had great response and one miraculous. So we can all have symptoms of FM, but like ANS different etiologies.

It's tough when some of us have multiple dx that are reall yet ALL UNTREATABLE!! *take a deep breath*!!

Also, for those who can nap, FM can be greatly controlled. Having FM doesn't mean you have insomnia or even alpha intrusion sleep but rest is KEY to keepng things under control.

Good luck and I hope you figure out YOUR situation.

Sorry to rattle on about me in my example but all this CFS, FM/ANS junk can get overwhelming after all these years...caught me on a bad night.

[Dizzy Dame]

Hi Linda,

I have the same leg pain you describe. When I first started getting it, I actually thought I'd somehow gotten hairline fractures in my legs because there was no other explanation.

After years of tests, they finally diagnosed me with fibro. That was three years ago. I'm not saying that you leg pain is fibro, but your case sounds similar to mine. The pain is unbelievable at times, feels like someone's taken a bat to my legs and arms!!

They've ruled out Lupus, Rhumatiod, Lyme etc. Right?

[Evie]

Hiya,

I have fibro and massage is the difference between me being fairly normal and being in a fair amount of pain. I also take magnesium suppliments. My pain is mostly in my neck/back/skull so im sorry but i cant be much help with leg pain advice.

(i also was previously diagnosed with CFS .. that and fibro tend to go hand in hand.. if you are really worried though go get another docs opinion to rule out other conditions, well if you can find a doc i suppose )

ps: i actually do have leg pain ... but it tends to be more of a ache than the stabbing or throb like pains i get elsewhere .... so i tend to ignore the leg pain as it is not as painfull compaired to the rest of my body ... hope you get some help or ideas to help with the leg pain!

[dizzygirl]

Ola folks...

maybe I should explain alittle about why I got the diagnosis of fibro...

I have had many x-rays done on my knees feet and lower back as well as upper cervical.. and MRI's.. X-rays in lower back show that I have muscle spasms in the lower part of my back.. (have not had MRI yet of lumbar..) and MRI shows herniated disk at the c5-c6 level.. along with a rotated spine just below the herniation.. along with scoliosis of the spine... and along with those finding comes some nasty damage to the soft tissue and such in my upper back.. and right shoulder.. there is often a great deal of pain.. asociated w/ this.. and of course the associated pain in the arms ribs and hands and what not...I also have gigantic knots all through out my collar bones-shoulders. shoulder blades, ribs and along the sides of my spine.. and up and under the back of my head..(the base of my skull.. where the head meets the neck)...since the age of 12 I have had pain issues and a mysterious problem with swelling in the right side of my body.. in the joints mostly.. knee-elbow.. neck swells badly..

My" pressure points" are all very painful most of the time.. nobody can really get close to trying ti rub the knotts out..b/c it hurts to the point of making me cry..

Anyways over the years my pain has gotten much worse.. and more frequent and much more increased in severity.. and intensity...

I do have alot of the symptoms of fibro.. though some over laps with POTS...chronic fatigue..(am never rested even after a full nights sleep.. and often will have to take naps to get through the day..) never feel refreshed.. I have the migraines..IBS..I often feel feverish.. and have all over body aches.. that are unrelated to the flu or cold.. or another illness.. my skin will hurt to touch it.. when the pain is real bad... (my hair and nails.skin will hurt too..)

So in a nutshell.. I think that its a combo of pots pain and fibro pain..w/ the distinct possibility of another unknown "MYSTERIOUS" somehting going on.. that has not been figured out yet..

I really need to have an MRI done from my head to my booty..I think that that would answer alot of unanswered questions...and also have a specialist who will look at the MRI scan and see what the average person does not pick up on...as these "INVISISBLE" illnesses are a pain to get proper treatment and DX for..

I'm sure that I'm forgetting alot.. that I could through in the mix.. but I'l stop rambling for now.. I just wanted to explain myself alittle better..

[joanie]

OK. My sixteen year old was diagnosed with POTS several years ago. Up until now, she can be very specific about what pain is where- muscles, joints, (also has EDS). Lately, she has been complaining that things hurt all over, in a different way, and can't specify where. Does it matter if she has fibro, too, in terms of treatment? Should we try and find out? Joan

[Jillybeanbme]

Linda,

I have Fibro and can totally relate to your leg pain & many other pains; which can sometimes feel like my body has been ran over by a very large truck!! My dysautonomia doctor sent me to Rheumatology for what he felt like was Fibro. The Rheum doc said yes and if I was not currently on some of the meds for my dysautonomia, I would have had all 18 trigger points. My started me out on just a low dose of NSAID's. Can you tell he's a little on the conservative side? By 3pm my AM dose had work its way out of my system and my body hurt in more places than before!!! He increased the dose and it helps some. Then, thanks to everyday stress of job, home & hurricanes (the change in barometric pressure severely affects me!) I had a bad Fibro flare, just lifting my leg to step up the curb on to the sidewalk brought me to tears. My whole body hurt tremendously. I got in to see my Rheum, he put me on bed rest for the weekend with taking muscle relaxers (Flexeril) 3x's a day, then 1 nightly after that. I can not believe the difference it has made. I still have bad days every now & then, but at least they are not as intense. Now if they could come up with some thing to help the skin sensitivity. If someone breathes on my neck I just want to deck them!! And buying clothes is always fun. I walk around stores feeling the material of everything to see if I will be able to tolerate the sensation. You just have to laugh and keep going.

I hope you find relief soon!!

Jill

[Gena]

"the soft tissue and such in my upper back.. and right shoulder.. there is often a great deal of pain.. asociated w/ this.. and of course the associated pain in the arms ribs and hands and what not...I also have gigantic knots all through out my collar bones-shoulders. shoulder blades, ribs and along the sides of my spine.. and up and under the back of my head..(the base of my skull.. where the head meets the neck)...

My" pressure points" are all very painful most of the time.. "

I have fibro too and what you mention above describes me to a tee! I can totally relate. I work at the computer most of the day at my job, so it really contributes to my pain.

I find massage very helpful. Even though my trigger points are painful when they are rubbed, I've built up tolerance to it and actually feel much better after getting them worked on.

Gena

[dizzygirl]

thanks all for the support...!

Jill.. I had to laugh at your comment about shopping and feeling the material that the clothes are made out of!! I do the exact same thing!!

I will spot something that I like.. and then reach for an arm or a leg and if the material is rough or heavy.. and doesnt breath.. then its out!

I'm having one of those days to day where I dont even want to touch the hair on my head.. as it feels like by brushing it that i am going to pull my eyeballs up through the roots of my hair!! LOL.. sorry..

GEna.. one thing that does help me.. and forgive me as I dont remeber the proper names for what is and what thingy is.. but.. I had a great PT.. who when i couldnt stand for my head or shoulder to be touches.. or pressure.. he would use this ultra sound like thing.. where you use this wand (SP???) then send ultra sound waveslike deep into the muscles.. and is supose to help relax them..

AHHH!! I loved that wand thingy!! and moist heat helps.. but most of the time the moist heat packs wil make me feel very panicked..(i know sounds weird..) what I mean is.. the heat laying on your back.. and espacially the collar bone or breast bone.. oh my god.. I hate that.. it makes me feel like I am going to pass out!!

but anywasy wanted to say thanls to you all!

HUGS

linda

[lalalisa]

Linda,

I just wanted to say hi and that you crack me up! Your comment about needing to get an "MRI from your head to your booty" was halarious!!

Hope you will get "to the bottom" of this mystery,

Take Care,

Lisa

[OCsunshine]

You have the leg pain, too!!!

I just posted a couple of days ago (I think it was titled "Shin Pain") and I don't think I got any responses. I figured no one else here has that kind of pain... I have never met anyone that experience this specific kind.

I totally understand what you mean... it's not a muscle problem, but a BONE pain. It feels as if my shin bones are going to crack in half. It feels what I think shin splints might feel like, but I'm no runner!!!

I just don't understand it. I have had x-rays of my legs, but they look "Normal" of course. Just don't understand why these pains happen... they are REALLY debilitating!!

Sympathizing with you,

Rachel