Second Neuro Opinion Necessary? Some Questions.

Hi everyone. I am not new to Healing Well since I already have Ulcerative Colitis since 2005. However, I was recently diagnosed with Fibromyalgia by my Rheumatologist and my primary doctor concurs with dx. I have always had issues with muscle pain & sensitivity. However, over the last 2 years it had gotten worse starting with bursitis in both hips (trochanter) and severe muscle pain post exercising. Then the last 3 months have been horrible, therefore, I finally went to the rheumatologist. I wrote down all my symptoms both muscle pain related and other stuff (i.e. severe fatigue, sleep issues and other stuff). All the "other stuff" she said was classic Fibromyalgia symptoms. She ran bloodwork with inflammatory markers (negative), thyroid, and all other regular labs like CBC - all normal. I was checked years ago for both Lupus and Lyme (negative). Not sure if they should be retested. She did the tender point test. I had 11 or 13 of the points (not all). She wanted a neurologist to check me because of some of the muscle related stuff. She didn't think they would find anything, but wanted to rule out other stuff just in case. She started me on Cymbalta (the generic) 30mg.

So I was not at all happy with the Neurologist. He did the basic reflex and coordination type tests. All were normal. But he really didn't ask me hardly any questions even though I was trying to engage with him about my symptoms. So even though he told me to continue with the Rheumatologist and it "could be Fibromyalgia", I did not get a level of comfort from him that he was thorough. I guess I sort of expected he would do the nerve test or more thorough testing and questioning.

I am contemplating getting a second Neuro opinion even though my primary thinks it's not necessary. I guess even though I have done a lot of research on Fibromyalgia and it fits with my symptoms, I am hesitant with it because there is no solid test for positive confirmation. Since I already have an auto-immune disease (ulcerative colitis) I always figured that my body pain, fatigue and other symptoms were from that and the drugs I am on to treat it. Plus I am peri-menopause and figured some of that has come into play. I will say that I was at the point this winter that I knew how I was feeling was totally not normal. I am 49 and sometimes feel like I'm 70.

I am wondering if you guys think a second opinion from a Neurologist is worth it? Did any of you get referred for Neuro testing in addition to your Rheumatologist? Also, I have been reading some of the posts and I see people mention flares. I am used to periods of flares and remissions with my Ulcerative Colitis. Is Fibro the same way? Or can I expect some level of pain everyday?

Thanks so much.

Hi RockerGirl, I can offer a little insight about the neurologist not ordering the nerve test. Since he said your reflexes were within normal limits this is why he didn't order one. The neuro's have to find a deficit upon the exam to warrant recommending an EMG. Any testing ordered by a dr has to be considered a medical necessity in order for insurance to approve it. In all honesty, an EMG is a good diagnostic test to diagnose something like carpal tunnel syndrome but that is pretty much it. Granted, I am not a dr. but an EMG study would not be a reliable test for Fibro.

Take care.

Hi, RockerGirl, and welcome. Well...I’m puzzled. You said your blood work showed no inflammation but then you say you have ulcerative colitis, which is an inflammatory illness. The Hallmark of autoimmune illnesses is inflammation so I just don’t get it! I have Crohn’s disease, autoimmune inner ear disease, and ankylosing spondylitis along with sacroiliitis and my inflammation markers are off the charts. Fibro isn’t inflammatory according to the medical community.

To get a diagnosis of fibro you have to have pain in all four quadrants of the body that has lasted many months. Cognitive memory problems usually tag along. But to get a diagnosis of fibro they have to rule out other illnesses that have many of the same symptoms...things like Lyme disease, lupus, and MS. They have to do this since there is no good test for fibro.

I sure would ask how you can have ulcerative colitis but not have inflammation.

This is from the Mayo Clinic.

“Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly.” 5 days ago
Ulcerative colitis - Symptoms and causes - Mayo Clinic

Be sure to check out Fibro 101...the first thread on the forum. There is a lot of good information there.

I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

I like pain erase and soothanol x 2...

Some like bio freeze, which is less expensive.

Since i can tolerate meds only in lower doses, the topicals help me with localized pain.

I use some type of topical daily..it really dials whatevr area is the worst, way back, which helps me function better.

Its trial and error to see what you respond best to..just know there are ways to be more comfortable..

I can get trigger point type pain that cannot be stretched out, so i have learned to treat those areas when they happen pretty well..using the trigger point handbook and you tube videos that pgysical therapist post online

Let me see if I understand correctly. It's not your fibro DX that you're concerned with but the possibility of other diseases being present as well. And, you'd like to rule other things out, too. Is that right?

If you're worried that something more is going on then do get a 2nd opinion from another neurologist or even a 3rd. They will either agree that no other testing is needed or they will do tests. But, one way or another that should help put your mind at ease.

RockerGirl. I think quite a few of us have myofacial pain syndrome along with fibromyalgia. Yes, they are very similar. That’s why I have a link in Fibro 101 about it. I always thought all of the intense pain was from fibromyalgia but ten years ago I got a gift certificate for a half hour massage. I NEVER would have gone if it wasn’t free. 😂. I went and thank God this massage therapist had an excellent education on how to massage fibro and Myofacial clients! She noticed the muscle knots Explained how the fascia overlaps and cause this pain and the pain can show up in an area close by.

That’s where the Trigger Point Therapy Workbook comes in handy. It shows where to look for the muscle knots that are causing the pain. For example, I would get side pain where it was hard to breathe and the muscle knots were actually found along my spine. I had a frozen shoulder. I couldn’t lift my arm above my shoulder and reaching behind my back was not possible. I found the knots were along my chest wall, on top and behind my shoulder, and also in my neck. I used Trigger Point Therapy on those knots and now I can move my arm exactly as it was designed and with absolutely no pain.

So, to answer your question, they seem to be separate illnesses but quite a few of us have both.

I also found out six years ago my very bad back and hip pain was being caused by ankylosing spondylitis and sacroiliitis and now that is under control too. So not all pain is caused by fibro. I’m glad you have a good Rheumatologist to help you. My rheumatologist helps me with AS and reassures me I also have fibro. But I handle the fibro with over the counter stuff and supplements along with exercise and pacing myself.

I have also learned not to wait until the pain is unbearable. I used to do that because I didn’t want to take medication but found it would take twice as long for the medication to take hold. So, through trial and error, I have found taking ibuprofen, Tylenol, and the muscle relaxer twice a day keeps the pain under control for me. Now, if I overdo, I take it every six hours for a day or two until the muscles settle down again. I’m doing that right now. I have spent the last three days planting flowers, digging out dead shrubs, transplanting others, and replacing shrubs. I worked to the point of exhaustion. (Did I mention about pacing yourself? 😂). So I started taking the medication every six hours and it’s working great!

I can’t comment on no pain since I haven’t experienced that. I have several chronic pain illnesses. But with my flares the object is to lessen the pain. I think it’s actually like that for most fibro patients. If you try to be pain-free, you could be disappointed. I aim for quality of life when it comes to pain. I know I’ll have pain the rest of my life. I’ve accepted that fact and have found ways to work around it to do the things I enjoy. I’ve had fibro for 31years and have had a good life in spite of this illness!

I hope this helps you.

Sherrine

Hi

Cathy - I am doing okay with the Cymbalta side effects. Possibly because I have been on Lexapro for the past 10 years and it is in the same class, although it's a SSRI and Cymbalta is a SNRI. My doctor started me on 30mg. The first week was difficult, but I don't think it was so much due to the Cymbalta as much as being on 2 of these types of meds simultaneously. Every night I had insomnia for the first 5 nights. I was taking the Cymbalta in the a.m. and then I take my Lexapro in the p.m. about an hour after taking the Lexapro my heart would be pounding and I would feel very agitated and then not sleep. Even though the doctors told me to stay on both for now (I'm only on 5mg of Lexapro), I think it was too much serotonin for my system. So I decided to taper off the Lexapro and now I am doing much better. Sometimes we just have to know our own bodies. I am not concerned being on the Cymbalta as much as getting off of it eventually which I have read horror stories about.

Sleepwise, I don't get refreshing sleep. I am a very light sleeper and wake up a lot to reposition myself to try to get comfortable. Needless to say I wake feeling totally unrefreshed...more like a truck ran me over and the fatigue has been off the charts for me for months. The Cymbalta has definitely worked already to give me more energy so my fatigue is somewhat improved. I also feel that it is helping some with the pain, but I think because I am tapering the other drug I won't know for sure until my system stabilizes.

Sherrine - Thanks so much again for all the info. I tend to overdo because I do not want to feel incapacitated. I have been forced from my other illness to learn to slow down and it has been tough. I like to work out so it is challenging. I love massage and usually only treat myself to those when I go on vacation. What is so interesting is that when I first started getting massages years ago I noticed that it hurt very bad. I learned to say that I need a "light" massage. I could never understand why my husband could get deep tissue and I could only stand light pressure at best. I suspect I have suffered from mild fibro for years before it was finally just diagnosed. The hard part is finding a good local massage therapist. I would like to find one experienced with fibro, but I'm not sure how to go about that. I like to be very proactive about my illnesses so I'm glad you provide so many details!

Sherrie - Very Helpful!!