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Avatar universal

Sticking with my current DX

Hi everyone.  

I decided "for now" to stick to my Dx of Fibromyalgia, maybe I also have chronic fatigue syndrome too.  They both match 99% of my problems.  

Down the road maybe 3-4 yrs later I will go to an MS specialist and get a repeat MRI done.  Unless,  I get a new symptom that is worrisome then I will go sooner.

Fibro in and of itself is really hard to deal with, and sadly with this weather / doctor appts I've been in a month long flare.  

I feel the added stress trying to find out whats wrong is making the flare worse.  Stress is a bad thing for fibro.

I'm not going to leave, maybe I can answer some questions to some symptoms that I have and maybe make one person feel better.  

I feel maybe I have a 1% chance of having MS............its tiny but, maybe in a few years I can either be DX'd with it (more showing up on mri) or it can be completely ruled out.  After 10yrs I think whats another 3-4yrs wait.  If I have NO new lesions then that will be a total of 14yrs and I can feel comftorable and erase that 1% doubt.

So many of you have kept me grounded!  And I thank all of you from the bottom of my heart :)

Lisa
10 Responses
230948 tn?1235847929
Hi

Iv followed your post but i dont think iv posted you at all.  I thought that you had some lessions on either your spine or brain MRI and if that is the case i would go to the MS specialist as they will be able to give you a clearer answer and if then they say they dont think it is you are a little clearer where you are.

I understand the stress of searching for an answer and its even harder when every part of your body is screaming out there is something wrong!!

Its exhausting being in so much pain all the time i know how that feels for the last 3 months i have painfull sx on a constant basis and bouts of painfull flares involving nerve and muscle spasms that last between 3 and 5 days.It has disabled me to the point of crutches but i have now come off these on my own no PT and am walking (limping more like a drunk person).

Fibro is a awfull painfull condition it effects you more then rheumotoid as that is inflammation of the joints but this is inflammation of the fibre tissues i believe. So it effects every muscle in your body.

Iv often thought if i had firbro as i have constant pain as well as bouts and most people on here seem to have just bouts of pain or sx. How did you get dx for fibro?

I have been taking lyrica 375mg a day and i have to say its work well i do have my bouts still and i cant walk very far at all but it does allow me to drive shorts distances and cope at home with my children and run my home. I get bad days and cant push myself at all.
Have you spoke to the doctor about this drug?

I hope you do go to your MS specialist and that you stick around here your vauled here and people do care about you.

Its not immpossible to have MS and fibro there are a few on here with multiple dx i think Quix is one.

You know there is something wrong and if you have all the sx that match MS then you need to go to this MS specialist so that they can help you get a dx and start treatment.  

We are all here for you on here and by reading your postings it looks like you have alot of people who care.

God Bless
Avatar universal
I have 3 foci on my frontal lobe.........not sure about C&T spine yet, didn't get the report.

I was dx'd with Fibro 6yrs ago by my pcp and then it was confirmed by a Rheumatologist.  They basically do LOTS of blood work to rule out other problems first.  THen they do a tenderpoint test...they touch certain parts of your body to see if it triggers pain.

My Pain Management Dr prescribed Lyrica @ 75mgs 2xs a day.  Since Aug 4th we are having problems with getting the Pre authorization faxed from the Drs office to my insurance.  This has been a DAILY FIGHT!  As of today there is still NO FAX!!!!!!!!!!!

The Dr gave me 30 5-500 vicodins to use for severe pain but I can only take 1 pill when needed.  But with nothing else for pain, AND IM IN A HUGE FLARE, I'm going crazy.  The nurse left my Dr 3 emails concerning the problems with the Lyrica and getting it approved, and letting him know I need to be able to take more Vicodin than once a day......right now mine only works 3hrs.  Im totally useless !!!!  He has NOT gotten back to the nurse or me since the emails to him LAST WEEK.

My DH is so upset and beside himself with all my pain, he told me I don't care what it costs...tell the pharmacy to fill it and he will pick it up.......the cost is $139.00!!!!!!!!!  

My husband and kids went out with his sister and her family since they are in town, they went to breakfast and a go cart track ( which I LOVE TO DO ) but sadly I'm in to much pain to go.......I couldn't take my pain pill this early, or the pain would be excrusiating by the time I got home.

Yes they really do care about me on here........I'm not leaving......I still be reading and posting if I have something sane to say.

Lisa
230948 tn?1235847929
I only know how it all works prescription wise over here in the UK and i guess i should be gratefull for the NHS over here in some ways. So sorry your having trouble getting this drug lyrica when you do get it build up slowley i found it had no effect till i was up to 300mg, im not sure what vicodins is?

I know that feeling of missing out iv been on 2 breaks recently with my husaband and kids and it was hard not being able to join in. My church too has a ladies night with a difference this saturday quad biking 4x4 i love all that im going with my friend if i feel well enough but ill have to just watch on the bench!!

I went to a rheumatologist two years ago and had some xrays on my hands and knees told i had muscle weakness and rhaynard syndrome in my hands and feet!! which i did not agree with as i only had pain and no colour changes in my hands. She ordered PT and the PT said my thigh muscle was in spasm all the time which stoped my knee working probley and caused grinding. I went for a while the spasm seemed to ease and i was ok but its since back in both but worst it the left.

Is your pain constant and in all areas of your body and do you have spasms?

Does fibro effect your balance and memory and word call?

Sorry alot of questions just wanted to know more about how fibro has effected you. Im still searching for an answer myself.

I would wait also and see what your spine one says as that could hold some answers for you.

Glad your staying around hope you post back

Take Care.
Avatar universal
I had been diagnosed as having fibro in 2000, just as you did by having negative blood work to rule out other disorders and the tender point check.  What pissed me off was when the rheumatologist I was sent to said that I din't have arthritis because anti-inflammatory meds didn't help with the pain.
I had been diagnosed with arthritis at age 17 and between 1980 and now have had five arthitis related surgeries and x-ray documentaion of multiple joint deformaties.
In 2006 my PCP suggested I see an immunological rheumatologist.  He diagnosed me with ser-negative inflammatory arhtritis (RA without a positive RF in my blood) plus a "minor" bit of fibro.
I take lyrica 75mg four times a day and Tramadol inbetween.  Up untill last October this worked well for me.  Now DDD has joined the team and the neuro workup has shown other problems brewing including multiple foci on both frontal lobes.
{{{{{hugs}}}}}
So, please do not give up.  
Avatar universal
My sister has Raynauds and her fingers and toes turned BLACK!!! IKk..........I have the cousin problem to her, its called Erythromelalgia....my palms of my feet and hands are really bright red ALL the time....in humid weather they burn/hurt and I cannot make a fist!

When Im not in a "flare" my biggest problem is my hips and legs....little arm pain.....but it is all the time.  I also have osteoarthritis in my lower spine.  I do get spasms but not often.

If Fibro isn't affecting my memory, balance or word call I don't know what is!!!!!!!!!  My balance is more when I get that dizzy sensation, room isn't spinning BUT I feel like I'm walking goofy and feeling of going to fall over.

I do know that Fibro mimics MS really well, thats why its hard to tell the two apart!  They were surprised that MS wasn't ruled in or out 6yrs ago while I was being tested to see if I had Fibro.

Fibro also affects your sleep...you don't go into REM sleep.  You wake up and feel like you haven't slept at all and your all over the bed!  I get periods of this, BUT I also get periods where I can sleep for 14hrs and still need MORE.  Think thats more like chronic fatigue.  But no matter how short or long my sleep is, I wake up feeling like I've been hit with a bus!

Oh Vicodin is a narcotic pain reliever with tylenol in it.

moeck - I will only be taking it 2x's a day, so I think that is going to be slow?  I was never on Tramadol, just Darvocet and that did nothing!

((((((((((Hugs)))))))))) to both of you

Lisa
Avatar universal
Hey guys,

Just wanted to let you know that I am right in the boat with all of you.  I was diagnosed with rheumatoid arthritis eight years ago.  I have highly elevated RF, positive ANA with speckled pattern, elevated sed rate, and positive EBV.  My bone scan also showed signs of arthritis in most of my joints when I was 21.  I am 29 now.  After six years of living with that diagnosis and trying ALL of the treatments for RA I went to yet a fourth rheumatologist.  He disagreed with the three prior docs and said he thought I had severe fibromyalgia instead.  I have tried cymbalta and lyrica along with Wellbutrin and none of them haved helped.  I had lots of heart problems while on them too.  I have become hypersensitive to all meds (even OTC) and allergic to things I have never been allergic to before.  I started having symptoms of MS four years ago after giving birth to my son.  My second bought of neurological symptoms was two years later after giving birth to my secong child.  Two years later, I am now in my third bought of MS symptoms.  My other rheumatological symptoms stay with me constantly.  I have had three MRI's over the four year period and seen four neurologists.  My first was clear.  My second two years later showed to white matter lesions (nonspecific) and my third two years after that showed the same lesions which did not change in size or shape.  My symptoms have worsened considerably over the last year.  I am still undergoing tests for MS, but all of the docs are really quick to just blame everything on the fibromyalgia.  I just don't buy it.  I have too many abnormalities in tests to think that this is all fibromyalgia.  Also, many of my symptoms just can't be caused by fibro (hand tremors, hearing going in and out, ringing in ears, vision problems, muscle contractions and tight banding around waist, frequent falling).  I am at the frustration level that all of you are at.  I just wish someone could figure out what is wrong with me.  It is so difficult because all of these diseases are so similar, and it is all a guessing game.  The thing I have learned through the years is to not give up on finding a diagnosis, but don't let it run your life either.  This forum has really helped me to cope.  I haven't been on as much lately as I usually like to be, but I think things will be slowing down for me soon.  I am here for you guys if anyone needs it.  Hang in there guys!

jenn
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