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jll536

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Joined
Jan 16, 2014
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3
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Diagnosis
01/2014
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USA
State
NC
Hi, I am new to the site and have so many questions. I am curious is anyone has had a similar experience since this month was the first time that I heard that my issues were possibly caused by Fibro. About a month and a half ago I had a week-week and a half of extreme exhaustion. I could barely function. I had some blood work done and everything was normal except that I had a low vitamin d level. The next week I started having trouble walking and was extremely dizzy. The balance issues and pain in my legs got so bad that my husband decided that he was going to take me to the emergency room. Upon getting there, a neurologist looked over me and said I had something called clonus and spastic reflexes and he was going to keep me over night to do a full head and spinal MRI to look for MS. Needless to say the next six hours waiting for the MRI were absolute agony since I am only 32 with a little girl. The MRI came back completely clean, other than some arthritis in my neck from an injury years ago. Then the spasms and twitches started. I have cramping and shooting pain which started in my right leg, then my left leg, then moved its way up my body. It got so bad and I was so stiff that i went back to the ER where they decided to do a spinal tap, once again results were clean. When I was referred to my neurologist they set me up for an EMG and I was also referred to a rheumatologist. The EMG came back normal and they had no explanation for the spastic reflexes, painful spasms, and constant all over twitching any time I sit down. The rheumatologist did a blood panel which all came back normal and said he thinks that I have Fibromyalgia. I suppose my concern is that i havent read anything where fibro can cause spastic reflexes, and the research I have done show MS or ALS. Is there a chance that this is a misdiagnoses? Should I seak further opinions? Has anyone had anything similar? I am up for any advice or direction. This is SO painful. I am pretty much sore all over although I can walk at this point.


The odd thing is that in the past three years I have had numerous strange issues. I developed a severe form of relux that I have never had before, I have had worsening of IBS symptoms which actually resulted in a surgery, My TMJ and tension headaches have been more frequent and painful than they usually are and my anxiety has been worse than normal. I have been sore in my muscles in my shoulder, neck, back, and sometimes hips for a few years but I always just assumed it was from my accident. Am I just a wimp for being so scared and drained from all this pain?


Thanks for taking the time to read this as I know I have a tendancy to be slightly long winded. Im just scared. :)
 

1sweed

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Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
ill536,
You have every right to be scared and we don't consider you a wimp. Sometimes in the early stages of any disease the symptoms are a jumbled mess making any diagnosis difficult. Often all tests come back normal as well. It sounds like the neurologist did a very good work up on you with the mri and spinal tap, bloodwork and etc... And you said you saw a rheumatologist as well. Much as I hate to say it I would advice that you try to wait it out a bit and consider the fibro diagnosis for now. If your condition gets worse then return to either the neurologist or the rheumatologist right away.

In the early stages of fibro, anything can be the norm. From muscles aches and cramps, to seizures or vision problems, IBS and countless other symptoms that mimic many other diseases. I had several different problems that spread into a lot of odd symptoms that often happened once or twice then never reappeared.

That said did the doctors offer you any medications to control these spactic reflexes and cramps? Please check out our pain topic and be sure to read the old and new posts for some ideas on coping with bad cramps.
I am sure other members will jump in as well and tell you their experiences and medications that have helped them.

I would also like to suggest that you consider seeing a mental health counseler who can help you with your anxiety issues. They can often offer ways and hints on new coping skills and ways to think outside the box to avoid anxiety attacks. I found doing this to be a lifesaver in my case.
This forum has many sections on ways to relax and take your mind off your illness for a while. Keeping warm is the most important way to prevent cramps. When in bed keep a extra blanket over your lower legs and feet to ward off cramps.

Hope you take time to read the posts as this forum is filled with lots of good information. :)
 

jll536

New member
Joined
Jan 16, 2014
Messages
3
Reason
Diagnosis
01/2014
Country
USA
State
NC
Thank you so much for taking the time to respond. I will definitely read through the posts on the forum to try and get as much information as possible. I appreciate the advice and am trying to be patient and wait it out, although that is hard to do. I know I have had an extensive work up, and the rheumatologist said I looked like a classic case of fibro to him, especially given all of my tender points. It is funny that you mention the vision issues as this week everything went blurry which I forgot to mention which is part of the reason why i was put on prednisone to see if maybe it was sinus related on top of everything else. My mother was diagnosed with Fibro about 15 years ago and she mentioned the same thing about keeping warm. Is this something that is passed on genetically? Anyway, I am so glad that I found the forum. As much as I would never wish anything bad on anyone, it is nice to be able to talk to people that are going through similar situations and have a real understanding.
 

TinaL

Active member
Joined
May 3, 2013
Messages
73
Diagnosis
06/2013
Country
CA
State
BC
Hi jil536 welcome to the forum. Fibro can be scary at first, it throws you all sorts of ailments/problems. After a while you learn what is Fibro and what is different. I have bad cramps/spasms in my legs and feet all the time, sometimes they shake so bad I can not walk. I use heat to help but when bad I take a muscle relaxer (Baclofen or Flexerill) The important thing to remember with Fibro is stress is bad, it will cause your symptoms to flare. Keep warm/lower your stress/and sleep when needed, are all tips that I received from this forum and it has helped me deal with everything. Fibro is different for everyone and you need to figure out what works for you. Keep reading/posting on this forum and you will find tips and support from people who understand what you are going through. There is research out there that says Fibro can run in families but it does not seem to affect everyone, some will have family history of it some will not.
 

Malloyca723

New member
Joined
Jan 17, 2014
Messages
1
Reason
DX FIBRO
Diagnosis
01/2007
Country
USA
State
nj
Hi, I too am new to this site...you are certainly not alone with all of your symptoms...I am having the same type of pain and it comes to new areas weekly...I went for a Brain MRI this morning to r/o MS...I insisted my doc order it because I can't take anymore of this not knowing for sure...I also have normal labs, EMG was normal. I sometimes just sit and cry because I feel people think it's all in my head - this is serious pain...I've been getting deep tissue massages and the tech tells me all the time how bad my spasm are...
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
So sorry to hear you are going thru this, I'd be really scared as well. So I don't think you are overacting or being a wimp at all, the way you feel is very normal. My sister experienced something similar, she suffers from fibro and also suffers from herniated disk and severe spine issues. One day she could no longer walk, she is now ok, but it was pretty scare she wanted to walk but couldn't. That has never happened to me tho. Fibro acts in different ways, some people have certain set of symptoms while others don't. I recommend you to find a good rheumatoogist that specializes on fibro. That way you can know for sure.
 

sarahgonzalez

New member
Joined
Jan 21, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
10/2013
Country
US
State
california
i aslo recently had blood work done to see if my vit D level was low still waiting for results i also suffer from ibs and gastritis i had surgery to see that it was all those things.. i just want u to know your not the only one out there with those pains before i took meds i was in soo much pain espically at night i almost went to th er but never did.. my legs felt very stiff and a horrible deep pain was all over my body esoically in the joints. what helps a little is taking a hot bath in espom salts and add some lavender oil it calms u and the salts r good for the muscle also invest in a heating pad they help so much
 

Dopey

Member
Joined
Jan 19, 2014
Messages
11
Reason
Undiagnosed
Diagnosis
12/2013
Country
US
State
Minnesota
I get the spasms in my legs when I have done too much during the day. The only thing that worked is Flexiral. I am now on gabapentin which is helping. My doctor told me that it is normal for someone with fibro to have low vit d. I take 1400iu a day and he said that is a low amount usually the dose is higher with fibro.
 
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