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darkchocolate

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Joined
Oct 13, 2015
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47
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Undiagnosed
Diagnosis
00/0000
Country
USA
State
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My pain started with both ankles aching and "burning" in January and a few days later my thighs ached liked I had done a workout yet I hadn't. I hadn't been on the treadmill because I thought that is what caused my ankle problems. Then I started with the tingling and numbing sensations in my legs that went to both arms. This was all within a week and half.

I had lots of blood work done originally, then a brain MRI because of the suspicion of MS. The blood work and brain MRI were normal, thank the Lord.

In February, I had a nerve study (EMG/NCV) done and that was perfectly normal as well.

I continued with problems and tried a chiropractor but my problems persisted. The numbing and tingling sensations stopped. I was told to consider stopping all artificial sweeteners and I did. So I don't know if there is a correlation or not.

I was then diagnosed (end of April) with hypothyroidism. I was told hypothyroidism can cause joint pain and muscle aches, so I made another doctors appointment hoping this might back the difference. The thyroid medicine did help with the fatigue, but the muscle aches and burning pains persisted. I figured I would give myself the summer to "recouperate" no school (I work as a special education aide) and I would feel much better. The fatigue did improve greatly.

My lower back bothered me still (burning pains) and the pains (muscle aches and burning sensations) in my leg were greater than my shoulders, so my primary doctor sent me to a orthopedic back specialist. Lower lumbar MRI was negative (except for mild arthritis) so he sent me for a epidural injection. That didn't help. The doctor who saw me for the injection sent me to a neurologist who is now sending me to a rheumatologist. The neurologist did lots more blood work which all came back normal.

I also had a cervical MRI which was normal.

The orthopedic doctor started me on Gabapentin, it did take the edge off but didn't take the burning pains away. The neurologist started me on Lyrica 50mg 3 times a day, October 6, 2015. One week later I didn't feel any better so she increased to 75mg 3 times a day.

I am now waiting on a referral to a rheumatologist. Sometimes my shoulders will burn, but that is more muscular below the joint. I have more muscle tightness in my upper back, but not real pain.

I don't have the extreme fatigue that a lot of people talk about. I did have fatigue last spring, but the thyroid medicine has helped that.

The neurologist said she can't find anything wrong, so we just treat the symptoms. I told her something is causing this, "are there other people like me?". She then mentioned the possibility of fibromyalgia put usually people don't present so abruptly. I am thinking to myself, the first symptom has to start at some point.

I would appreciate any input or experiences you are willing to share.
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
Michigan
Hi DarkChocolate,
I was exhibiting issues in April 2012 but wasn't diagnosed until a year later by a better rheumatologist.

I think mine started with pain in my ankle, like a repetitive motion pain. I mean that's what I figured bc we were driving a lot to the other side of the state (2 1/2 hours). It seemed silly and my neighbors laughed at me for suggesting that was the cause. A few days later I stepped off the porch step and my ankle buckled. It was useless and I had to laugh flat in the back of my aunt's SUV all the way to Tennesssee (8-10 hrs) for my sister's wedding.

But what sent me to a rheumatologist were these huge lumps I was getting on the back and side of my neck which would spread to my shoulder and scalp. He thought I had a lymphoma but after an ultra-sound, I was finally diagnosed with my first symptom - angioedema or hives under my skin.

I tested positive for the ANA that they look for in Lupus but nothing else pointed to it. I dinked around with that rheumy for a year before I finally decided he had given up and didn't feel I was worth his time.

That was a good thing though bc I was able to get in with the top rated rheumatologist in SW Michigan. By that time, I had developed pain in all of the trigger points plus pain in my back, especially between my shoulder blades and all along them. My new doc diagnosed me with Fibromyalgia, started me on Meloxicam and Voltaren Gel. When the pain got to a certain point which wasn't being controlled by those meds, I was sent to a Pain Management center. I tried injections and physical therapy in their therapy room. I hurt myself after a month or so. I was a little angry bc my physical therapist left the room to work on another patient during my therapy time and that is when I hurt myself.

I began to see a new dr at that Pain Management center and he referred me to pool therapy (wonderful stuff!) and put me on 600mg of Gabapentin and Cymbalta. The combination helped alot.

It seems though that as the disease progresses, the more symptoms I develop. I feel like I complain a lot bc I always have new symptoms and now maybe another autoimmune disease. I am waiting for my dr to call me with test results.

I hope this bit of my story helps. Keep a journal. I started one and then quit for awhile bc it was depressing BUT it will help you and your doctor. See cmetry's entry on keeping a diary. And now that I am trying to get disability, I'm hoping it will help with that.

I am so relieved for you that you do not have MS! Count your blessings, eh? And you think, yeah but that doesn't stop the pain. I understand and hope that you're able to get into a rheumatologist quickly.

Best wishes for a pain free day!
 

darkchocolate

Active member
Joined
Oct 13, 2015
Messages
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Reason
Undiagnosed
Diagnosis
00/0000
Country
USA
State
SC
Thank you Cheryl Ann for sharing your story. I am so sorry you weren't able to enjoy your sister's wedding to the fullest because of your ankle.

I did have the ANA lab work done in January of this year and that was negative. I don't know if that can change or not with time.

I have had people (not medical professionals) ask me about fibromyalgia in the past. When I looked it up, I didn't feel like I had those symptoms. Yes, I had pain but it doesn't seem as severe as people I read about, I don't have extreme fatigue or the trigger points. If I push on the areas I see in pictures it is not very painful. This past Tuesday was the first time a medical professional has ever mentioned the word fibromyalgia. I still may not have it and maybe my case is just different than other people. That is one thing I am coming to understand is that everyone has a different story and while some may have similar issues, others present differently.

For some reason I have the burning pains and deep achy/sore muscles. It just gets discouraging when all the test come back normal, yet it isn't normal to feel this way. Hopefully the rheumatologist will have some insight.

Yes, I am very thankful to not have MS. I hope you get good news from your doctor on your blood work.

Have a great weekend and I hope you can enjoy it despite what you have to live with daily.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,377
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome to the fourm.when I first was told I had Fibro I swore blind the Dr was wrong. I was so tired but I had no pain.no pressure points nothing.
It took me weeks and weeks to understand Fibro is diffrent for everyone.
Mine hit me like a brick.no build up nothing.about four months after the tiredness the pain started.the aching the feeling of flu .sore skin.that hurts to even put cloths on.
I hope u don't have this evil condition ,but don't be surprised if u do x
 

darkchocolate

Active member
Joined
Oct 13, 2015
Messages
47
Reason
Undiagnosed
Diagnosis
00/0000
Country
USA
State
SC
Forgetmenot, thank you so much for taking the time to respond. I knew someone probably 10 + years ago that was diagnosed with fibro. The main thing I remember about her was her saying she hurt when she was touched. Only twice between Jan and today has it ever hurt to be touched. I do remember not so much the sheets but the quilt or comforter being uncomfortable on my legs now that I think about it. I can't imagine it hurting just to put clothes on, that must be horrible.

I just can't understand what is causing this, yet so many are affected. I have read what they think might trigger the onset of fibromyalgia, but I don't think those triggers are something that happened to me. Unless I was exposed to a toxin that I am unaware of. I did have an infection in my finger from a very minor poke of a plastic hanger that was broken, November 2014. To be that was bacterial and not viral. Below is something I copy and pasted earlier, but I can't find the source now.

Even if you are born with a genetic predisposition to fibromyalgia, you still need to experience something that triggers the disorder. This can be a viral infection, emotional stress, an accident or injury or, perhaps, exposure to certain drugs or chemicals.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
My symptoms came on very suddenly and without an obvious trigger. In the space of a week I went from busy working mom to unable to do simple tasks (like driving or opening doors). My main symptom was burning pain in my hands and feet, and I was really afraid it was rheumatoid arthritis. All the tests came back healthy, and the rheumatologist diagnosed me with fibromyalgia. I was doubtful at first too, but as I have learned more about fibromyalgia I have come to accept it is the correct diagnosis.

No one really understands what causes fibromyalgia. Right now researchers are thinking of it as a genetic vulnerability that is activated by environmental factors, which is where the statement you pasted probably comes from. But it is important to remember that is just a hypothesis. Genetic researchers are still trying to finda genetic sequence that is related to fibromyalgia. All they know for sure is that if someone in your immediate family has fibromyalgia you are 8x more likely to get fibromyalgia than the general population. Is the increased risk due to shared genetics or shared environment or both? Right now it is not clear..
 

darkchocolate

Active member
Joined
Oct 13, 2015
Messages
47
Reason
Undiagnosed
Diagnosis
00/0000
Country
USA
State
SC
DK engineer, thank you so much for sharing your story. It really helps to read how fibromyalgia affects others and how it all started with them personally.
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
Michigan
My niece has fibro along with a slew of other autoimmune diseases. I also have 3 cousins that have MS (all on my Mom's side of family).
 
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