Can my *fibro* really be MS?

[gzusrulzme]

hello everyone!  Im so glad to find this site and desperately hope someone can help me out with some questions.  First of all, I was diagnosed with Fibromyalgia after years of debilitating symptoms.  (there are so many I dont know if I could post them all here!)  Now I understand that Fibro is a horrible thing to have, and it is a legitimate illness.  My problem is that Im getting so much worse and the doctors just keep telling me that I have to make "life-changes" in order to deal with it all.  I honestly feel as though I am dying sometimes.  I just sit on the couch and cry because Im so incredibly miserable and feel like nobody in the world could care.  Here are some of my symptoms if anyone could just take a moment to listen?

Disk Degenerative disease--chronic neck pain.  i do go to a pain management specialist, but all he does is give me Lyrica and Hydrocodone (which makes me throw up, however is the only thing that half way helps the pain)
Interstital cystitis (comes and goes)
Insomnia--I never sleep for more than 3 hours or so
Irritible bowel syndrome (have had colon surgery for that, but my stomach is a mess)
headaches like crazy
retinal detachment in both eyes (2 years ago, better now but still see "floaters" occassionally)
constant burning pain all over body
horrible weakness all over body
fatigue....fatigue....fatigue.  (im 39, but feel like Im 90...)
memory problems
a feeling like there is a tight band around my head
hot flashes!!!  OMG, I cant stand the heat, and its getting worse
swallowing problems (this is a new symptom)
dizziness
I generally just *feel* like there is something horribly wrong with me.  I opened a spa back in April and had to shut it down within 3 months because I was so weak, and so sick.  
numb spots in my right thigh
etc. etc. etc. etc....

Ive had MRI's, they say I have a very small aneuyrism in my brain--but nothing to worry about!  They said on my first visit that they wanted to do a spinal tap.  THEN, on my second appointment, they just went straight into the "you have fibro" thing and that was it.  Along with Disk Degenerative Disease in my neck that cant be fixed.

Can they diagnose a person with Fibro, and be wrong.....can it be MS instead?  At least they could treat me with something if it were that.  I have weeks that are so horrible that I tried to take my own life 2 weeks ago.  I just cant take it anymore.  (i have a psychiatrist appointment tomorrow by the way...)  But the pain is outta control with me.  Then I will have a couple of days that are okay, and then worse than ever.  Now Im at the point I cant function.  My family does NOT understand what is happening.  I have went from being a very active, gardener and busy mom to a miserable, whinny, couch object.  I cant clean my house or anything anymore.  

Do the medications for MS work?  do they help to stop these symptoms from being worse?  

I really appreciate any feedback or ammo to take with me to the doctor.  thank you all so much and have a blessed day,

Suanne

[IClymegirl]

Everyone who is suffering from IC needs to get tested for lyme and bartonella thru Fry labs..I have IC and lyme disease..I will be taking antibiotics starting in August. I have been undiagnosed for 12 years..I have so many weird symptoms I can't write them all down.

[gzusrulzme]

I meant to also say thank you for the prayers.....without them, I probably wouldn't be here today.  truly, thank you~thank you, thank you!

Suanne

[gzusrulzme]

thank you all for such wonderful advice.  I was tested by my neuro for the Lymes disease, and he says it came back negative---however, I did read somewhere on here that there is another test for Lymes that I probably did not have and I will check in on that.  I have never heard of Celiac disease, I will investigate that one as well!  Thanks for the info.

I do currently go to a pain management specialist, but it seems they all say the same thing.  Just take some Lyrica and hydrocodone (which makes me ill) but when I tell them that it makes me throw-up they put me on something else that doesn't work at all.  At least the hydrocodone does make my pain subside, just throw up at the same time unfortunately.  

Where I live (north texas area) there are ticks everywhere.  Especially when you live near a national game reserve, like me.  Its in my backyard for cryin out loud!  So Lymes does make since, and my sister has lymes.  I just totally disregarded it when they said that it was negative, because after all, you trust what the doctor tells you--right?!  

I appreciate all of you sweet ladies chimin in, ya'll have a great day!

Suanne

[MrsAristotle]

my friend has fibro and CFS, and is in terrible pain takes morphine derivative drugs. She is only 33, and now nearly bed bound with 2 children to look after.

She has a lot of your problems.

Her MRI was clear as they did check her for MS, but she has the flu like symptoms of fibro, the terrible sickness of fibro and the IBS as well and the pressure points of fibro.

It appears that there is now talk of putting together Fibro and ME and its believed the 2 belong to each other now as the symptoms are almost the same.

This would fit with a lot of people who get MS and M.E. or Fibro as well.

Sorry you are so ill. You need to sort out your pain relief which will help your quality of life overall. Good Luck.

[Quixotic1]

Hi, and another welcome to the forum.  I read all of your posts and have a few ideas.  First, it is totally possible to have both Fibro and MS.  I actually do not think it is rare, though sometimes I think that people with MS are sometimes first misdiagnosed with Fibro.  Several of our members have that dual diagnosis.  But, you mention several things that make me think you have something more systemic (throughout the whole body) going on.

These are the weakness over your whole body
The history of inflammatory bowel disease
Retinal detachment
Interstitial cystitis
burning all over

The idea that first jumped out is Lyme Disease.  Lyme affects more than just the central nervous system and all the things listed above are pretty common in chronic Lyme disease.  I even looked up the retinal detachment and interstitial cystitis and thse are frequently listed with Lyme, yet not with MS.  So I bleieve that you should be thoroughly tested for Lyme disease with the standard test and with western blot tests done at different labs.  Poeple with Lyme disease often complain of that feeling like they are actively dying.

Also, the history of the bowel disease makes my want  you to be tested for Celiac disease, also called Gluten-sentsitive Enteropathy.  This autoimmune sensitivity to gluten can cause all sorts of neuropathies like you complain about, though I don't know about the retinal detachment or the cystitis.  I would have to do some research.

We have forums here for both Lyme Disease and for Celiac Disease.  You might also post on them to see if you get any additional ideas.  Both of these would be better things to have because they are both treatable.

I'm not saying that you do not have MS.  There is no way for people online to diagnose you.  You are in a good place here for support and ideas of directions to take.  I hope we can help you make sense of things, but you might want to check into both Lyme Disease and Celiac Disease.

Quix

[saveone]

I a sorry you are in so much pain.  I will keep you in my prayers.  I am new to the forum and not in anyway to I claim to an expert.  However, when I was at the clinic on the 29th of Sept I met a lady who was 25, had 2daughters ages 4 and 2.  Her only means of mobility is the wheelchair she uses.  From her I learned that at age 20 she was living here in KY.  Her dr told her he thought she had MS.  She moved to Michigan before she followed up.  There she was dx with Fibromyalgia, which I know very little about.  MS was never mentioned again.  After she returned to KY she was having so many symptoms she was referred to a neurologist.  He dx her with MS.  So yes it is possible but probably rare.  I hope you find your answers.

health, hope and happiness to you.

[gzusrulzme]

thank you Heather.  I did have an uneventful MRI on that day, it was very late at night (i was the last appointment of the day around 7:30 pm) and the only person there could not get a vein.  Oh, he tried--trust me!!  I have always had that problem though, with "rolling veins".  I will most definately drink more fluids for the next test--thanks for letting me know about that.

I did go to the Psichiatrist today and they put me on Geodon.  I hope that helps me with the depression, and the physical problems that it unfortunately brings.  

I also hope that I do not have MS.  I guess that I am so worried because I have been told by so many that what I suffer with sounds to them like MS.  I honestly had no idea what it even was all about until I put in some symptoms and it came back as something that should be ruled out.  I just need answers, and when I started reading on here the stories that others have shared--it sounded just like me!!  I could relate to them all in some way, and in a few it was Exactly what I was/am experiencing.  

I will keep you updated as I can.  I appreciate all of the feedback, you are all very sweet here!

Have a blessed day,

suanne

[Heather3418]

Hi Suanne and Welcome to the MS Forum.  We are glad you posted your story.

You have had so much going on that it is obvious that you have known real suffering.  I am so sorry.  As "ess" said, it's very hard to tell if this is MS.  Of course none of us are doctor's only people that are dealing with MS or in the process of trying to get a diagnosis.

The problem with your MRI and not being able to "get a vein," can be common.  I suggest if the doctor's every want to repeat the MRI that you drink plenty of fluids before your testing.  This helps them find a vein more easily if you are well hydrated.  That's what I do for every MRI.  Did you have to go through alot of needle sticks and they just gave up, or did they try to get one of their other staff to try to get a vein?  It's a shame that you went through the whole MRI and didn't get it with contrast.

If you have been ruled out for all the mimics of MS, it still may be hard for the doctor's to diagnose.  But Fibro is more disorder of the joints themsevles and the surrounding muscles.  The fatigue is very common in both MS and Fibro.  MS is most usually known as having distinct relapses and remissions.  During that time, there is usually an absence of symtpoms in between.  At least for most people that have MS.  Some people have symptoms that remain after the attack.  MS is a real disease of elimination.  It's a difficult disease to diagnose, unless it is staring the doctor's right in the face.

Are your doctor's thinking any of this is caused by MS?  If they do, they need to find you a doctor that can sort all this testing out.  It does sound like you have doctor's that are doing all the appropriate testing.

Maybe it would help if you do some reading in our "health pages" and see what you can identify there that may sound familiar in your case.  It's still can be other diseases going on.

Please keep us updated and hope that you find someone that is willing to do all the testing fro mimics and get down to the bottom of all of this.  I of couse, hope that you do NOT have MS.  You have enough on your plate, without that.

God Bless you,
Heather

[gzusrulzme]

Okay, this is my 3rd attempt to post and hopefully I wont mess up this time and lose it all!!  I appreciate all of the feedback.

Im going to post the short version this time!

Ive had stomach/colon problems since a child.  This new stuff has been going on since I re-injured my neck in 2005.  while under going treatments for that (epidural injections to a Rhizotomy) I started to get sick.  

I felt like I had the flu for a very long time.  I would start to get a little better, then "boom:" it was back with a vengence.  I would get numb in my leg or arm--always on the right side of my body.  It got to the point that I had to use my other hand to hold my arm up.  Then it would calm down somewhat, but never fully.  Ive had the whole work-up for Fibro and was diagnosed by a RA specialist.  thats been 2 years ago now.  I really feel sometimes that Im dying.  I dont know what else to do.  Im scared to get excited if I have a good day, because something will come back and its worse the next time around.  I feel exhausted from it all.  I cant walk up my steps to my own house anymore!!  Without the pain, and its such a workout for me.  Just simple housework is exhausting to me.  I lived a very busy life before this all started and its just not like me to be this way.....

My MRA/MRI of the brain and spinal collumn revealed an aneurism on the "cirlce of willis", and disk degenerative disease, and also a "Hydromyelia".  They did NOT use contrast because they couldn't get a vein.  (even though the doc wanted it done with contrast and without.)  

I cant remember what else I wanted to say, but Im sure it was important!

there's just so much of it and that is what is freaking me out.  Im only 39 years old.  I feel like Im just sitting here watching the world go by me and cant touch it.  Im scared that something bad could be actually going on and now Im just labeled with the Fibro thing and nothing is happening anymore.  the doctor appointments are few and far between as well--sometimes 6 months, and I have a dozen things happen between those times it seems.  

I appreciate you all for listening, and when I hit the post comment button, I hope I dont lose it all again!!   ~rant over~

suanne

[Lulu54]

Hi Suanne,
Ess and Amy have give good advice. I just want to add that you are welcome here to question, rant and find out more from us.  Please stay in touch and let us know how we can help, ok?  my best, Lulu

[Amyloo]

Hi Suanne,

Welcome.  First, there are a handful of us here at the forum that have both fibro and MS; usually diagnosed with fibro and then MS.  That was the case with me.  I hear you on how you are feeling; both of these illnesses zap the very life out of you.

Fibromyalgia symptoms are very very similar to MS on clinical evaluation.  Have you had a rheumetologist examine you?  Has your doctor done the "pressure point" test for fibro?  You say you have had MRI's; do you have the actual report?  Sometimes (as was my case) a doctor will look you in the eye and say "normal" when in fact your study is anything but, when you read the report.

Have you had a c-spine or t-spine MRI?  Lesions can appear there as well; my case I have two on my t-spine which affect my legs and bladder.  

Don't worry, you will receive lots of excellent advise here.  And yes, MS meds do stop symptoms from getting worse, to some degree.  

Also, with regard to the pain med funk; I hear you.  Have you tried darvocet?  This is what I use; it is the mildest narcotic and the one I can tollarate.  I have also just recently started Cymbalta, and let me tell you this has made a huge, huge difference in my daily pain level.  I'll be checking the board alot this evening.  Hope to hear from you. God bless you, Amy

[essdipity]

Hi, and welcome to the forum. I'm so sorry that you're in such a state. It sounds truly terrible. I'll try to answer your questions as best I can.

First of all, MS is a diagnosis of exclusion. It takes a good while and many tests (for most people), before doctors can be reasonably sure, and often even then, 'probable MS' or 'possible MS' is often the verdict. Things can stay that way for a long time. I tell you all this because I think you're hoping that if only you could get a quick diagnosis of MS you could start to feel better right away. Unfortunately, that is not the case.

If you're really interested in pursuing this possibility, you need to see a neurologist, preferably one specializing in MS.  You might have repeat MRIs, and other tests, such as an LP, a VEP, and so on. See our Health Pages for more information on these. Since there are lots of mimics of MS, there would be a lot of blood work, and of course, a thorough neurological exam.

But I do have to say that what you describe does not sound like MS.  Few if any MS patients have pain or weakness all over. That's because symptoms in MS are caused by lesions on the brain or spinal cord, or both, that affect specific areas and are not system-wide. Also, in general, MS does not affect the digestive system, except to cause problems with urination and bowel control. IBS and similar symptoms are not part of MS.

Another thing for you to understand is that MS is treatable but only up to a point. There are no meds to cure it. What we do have are injections that may slow down the disease progress, but these do not work for everyone by any means and there are no guarantees. They also don't provide relief from any symptoms. For that we have meds that are also often given for fibro, such as Lyrica and neurontin. We have spasticity reducers, pain medications, energy boosters, and we have steroids for acute flares. These are far from perfect, and too many MSers get very little relief from them.

You are right, there IS something horrribly wrong with you for you to feel the way you do. From what I know, fibro can certainly make people feel that way. I hope you will see your doctors and find out if they will do more testing. In any case, do whatever you can to get medications to treat your symptoms and make your life more bearable.

Please let us know how this turns out.

Many hugs,
ess