Fibromyalgia or MS

[Ndobbins]

Funny how doctors are. Saw a rheumatologist today & felt like she had already decided before seeing me that I have fibromyalgia. I felt like she didn't listen when I told her about the buzzing in my foot or the electrical sensation in my head, slurred speech. Just to mention a few. She put me on cymbalta & still in lyrica. So, we will see how that goes. Trying to be optimistic.

[Deb61]

I have to interject here, too.  I had almost the same experience with this.   I went for two years going along with this diagnosis, even though I was certain that I didn't have fibromyalgia (or that it was the entire answer to what was going on).  

I was diagnosed with fibromyalgia with no trigger points.  The only place I was sensitive was when the doctor pressed his figertips into my ribs as hard as he could press.  I was never pointed in the direction of a neurologist during this time.  My neurologist refutes this diagnosis for me.

Deb

[StrawberryCupcake]

Nancy, be very careful with the Cymbalta.  I was put on it for Fibromyalgia and developed a badly swollen liver from it.  I was in terrible pain for many weeks until the liver went back to normal size.  It is a very powerful drug.  If you are getting any of the side effects, go off it immediately.  

God bless
Diana

[StrawberryCupcake]

Nancy, be very careful with the Cymbalta.  I was put on it for Fibromyalgia and developed a badly swollen liver from it.  I was in terrible pain for many weeks until the liver went back to normal size.  It is a very powerful drug.  If you are getting any of the side effects, go off it immediately.  

God bless
Diana

[BOK2Bjan]

Hi again,
I don't get on the computer much, so I'm just reading your response.  I just wanted to add that I too took Lyrica, as an adjunct to other pain medications, trying to find relief.  However, I quickly started having side effects - something I don't usually have with my medications.  I began having jerking motions - involuntary - which can lead to serious problems.  I stopped taking it and it stopped.  Most people don't have a problem, so I don't want to discourage you from taking it, however when you said you are having the tingling etc. since beginning the drug, I thought I'd comment.

It could be a symptom as well, so you might want to challenge the idea by going off it for a week or so, to see if it goes away.  Just a thought.  Hope you're doing some better.

Blessings, Jan

[Ndobbins]

Thank you so much for your post!

I honestly don't feel like I have fibro either. I did have sore spots on my hips but nowhere else except maybe one one knee where she pressed.

It makes you wonder IF doctors ever really listen to their patients.

The Cymbalta has helped my mood. I however don't like taking it. I still am having pins & needles, numbness & pain taking it & 300 mg of Lyrica. I guess I will just have to wait & see what happens to me next.

Take care & best wishes,
Nancy

[BOK2Bjan]

Had to comment.  After I'd been having some very serious symptoms for several years, with one rheumy dx me with RA, I went to a different Rheumy due to insurance change.  I had reddish-purple arms and legs which shocked him when he walked in and was so stiff I could hardly walk.  I had also already been dx with raynauds and erythromelalgia and a few other conditions.  Anyway, he said X*#!! oh my you look like you may have ____(something I can't remember) and then left to order x-rays.  I tried to stop him, saying I'd had them and they were all normal, to which he responded "I only use my own".  I then waited around 45 min, then had the x-rays and waited again.  He came back, put the films on the light box and started talking to a recorder, saying blah blah blah normal, blah blah blah.  Then he started grabbing my arms and touching spots (trigger points), saying, "does it hurt here", and I said NO, but, I have pain. . . . "does it hurt here", I said NO, but. . . . "does it hurt here", NO, but. . . "does it hurt here, NO, but........  I couldn't get him to listen to a thing I had to say, and none of the places he touched hurt.  I don't have pain anywhere except my actual joints.  He finally said "well, you have fibromyalgia, has anyone ever told you that?"  I said no, because I don't have any of the symptoms.  He then raised his voice and told me that after 25 years in his field, he ought to know fibro when he sees it etc.  I thought I'd burst into tears.  I said, but I don't hurt in any of the places you asked me, but he said "close enough" and was actually yelling at me like I'd challenged his manhood!!  I think he thought that when I was trying to cut through all his poking and questioning, and just TELL him where I hurt, he assumed I hurt just somewhere near where he poked.  I was so upset I'm sure my blood pressure was way up and I know I was flushed.  I'd spent so much time there and he'd never once allowed me to speak.  He didn't even look at me, but only talked into his recorder.  Since that time, I've been dx with MS, Systemic Sclerosis, and you name it - this past week Diabetes and Heart Disease were added to an already exhaustive list of diseases.  Not one doctor has ever thought I have fibro (thank goodness), and I don't have any muscle pain or diffuse pain, but rather severe joint swelling and pain and of course all the weird MS pain etc.

I never went back to that doctor, although I've thought about that experience as one I wouldn't wish on anyone.  I admit that it bothers me still more than it should I suppose - but when we don't feel heard, it is very dehumanizing!!

I obviously related to your post and hope you find answers!  Doctors, like the rest of us, are not perfect, and some are certainly better at interpersonal skills than others.  I've tried to be forgiving, but somehow, when it's our health, it's just very hard to have a doctor dismiss our own descriptions of our symptoms.   So many autoimmune and other complex diseases don't present themselves with a clear clinical, lab, or imaging picture in the beginning of the disease.  Listening to the patient is one of the most important skills a doctor has.

I wish you well and hope you find answers to your physical symptoms.  Blessings,  Jan

[Ndobbins]

Do any of you have neuroapthy & have you noticed any of your toe nails turning a blueish color?

[RedFlame]

I'm sorry for all the confusion and 'stuff' you are going through.  All of this takes time----lots of time.  If you stay with this rheumatologist, it could take him some time to get to know you.  Hopefully, he will assess you more thoroughly.  Had this rheumatologist communicated with your PCP?  They may have made that diagnosis together

I wouldn't worry about the medicine masking the illness, there is nothing under the sun that takes the pain of MS away.

Hang in there and don't be afraid to ask questions OK?
Red

[Ndobbins]

It's scary not definitely knowing if you have MS or fibro & if it could be causing more damage. I guess I will just have to wait & see.  I haven't started the Cymbalta yet. I read some online how it can make some people feel funny.  I am going to take it tonight with supper.

Thanks again for all of your comments. I appreciate you all!!!

Nancy

[Sumanadevii]

Actually with a diagnosis of MS there is no cure ...only treatment of symptoms.  The advantage of being able to take a DMD that may stop some of the damage.  

[drsdonthelp]

After I had my neuro. appt. couple of weeks ago, he also said to me, has anyone mentioned fibro??  I said yep, and it was also ruled out along with lupus, rheumatoid arthritis, diabetes, b12 and lyme disease.....
He dx'd me with simple partial seizures and said that when I am slurring my speech for two weeks that it is my brain misfiring and getting stuck!!!! I Say What?? Medical emergency if that happens, but that's  his story and he is sticking to it until something shows up on MRI I guess.
First neuro had me on aggrenox for a TIA at 36 years old at the time,, I had been through all the heart tests for that too, Cardiologist said, did anyone test you for MS??
LOL LOL LOL
What is this MySterious disease that these drs dont help figure out !!!!  

Pamela

[COBOB]

I'd say they control the pain and mask the symptom.  Once pain is documented, why live with it?  I might not take it before doctors visits, but I would not live with day-to-day pain just to "prove" that it is still there.  I take Tegretol to increase the threshold for pain activation in the Trigeminal Nerve.  It really isn't there to "Mask" it.  I'm treating a specific symptom, because we are still working on treating the underlying cause.

Don't suffer when it isn't for a cause.  That's the difference between folly and martyrdom.

Bob

[Ndobbins]

Thanks for your comments. . I don't hurt everyday - the pain varies.  Today my right leg is really bothering me.  It feels real stiff on the front of the lower leg & hurts when I walk. It also feel stiff across the top of my foot.

Honestly, I still don't think I have fibromyalgia & am VERY uneasy about taking another drug especially an anti-depressant. Lyrica & Cymbalta don't cure the problem, they truly only MASK the pain!  

I guess I posted yesterday & really didn't ask a question.  I just wanted to know what others thought about it too.

Thanks Bob & to all of you who post comments.

Nancy

[COBOB]

Maybe I'm just a bone head, but both docs should be working you up.  I know of no neurological condition that would preclude you from having Fibromyalgia and I can't think of anything in Fibromyalgia that would preclude you from having a neurological condition.  Changes in speech  make me think like a zombie: BRAINs  If you have trigger point activation in the known Fibro trigger points, I'd think Fibro.  If you have both, think comorbidity.

Easy.  But then again, I didn't go to Med School.

Bob