Looking for advise and comments - been told I have neuropathy and fibromyalgia

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TeacherinNYC
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/13/2010 6:16 AM (GMT -7)   
Hi,

I am 27 years old. In reasonably good shape. Never had any prior issues at all except when I was an adolencent I started having ankle pain and was told it was due to flat feat - something which my podiatrist is now telling me that she feels that it was never that since it was found out in the course of researching my pain that I have small fiber neuropathy.

Last two years I have had what the drs now call "precursors". I was more tired, inability to concentrate (due to ADD) and was having some sexual difficulties.

A few months ago I sprained my ankle badly. Since then I have been in constant pain. I have memory problems - both long and short term. I cannot concentrate. I have pins and needles/numbness if I put my limbs at different angles. Sitting hurts. My joints, especially my hips, have been really hurting. Have been having pain all over, consistent as in both locations on both sides of my body-however my left side hurts the most and my left ankle never stops hurting.

All my blood work came back fine. EBV however was high - indicating previous exposure (EBV VCAlgM 0.42, EBV VCAlgG 3.12, and EBV NUC AG 4.58) however I noticed that chronic fatigue syndrome indicators could mean a high EBV count but havent talked to my dr about that.

Any amount of "exertion" makes me out of breath and feel like I ran a marathon. I cannot hold my two kids without being in pain/numbness in limbs. I am having difficulty walking straight and now have to use a cane. I cannot walk up a flight of stairs without feeling like I am going to fall over. I am having lightheadedness, dizzyness, vision issues. To make matters worse I had a low pain threshold and Novocain/codeine drugs either have no effect or a severe lessening of an effect on my system.

So far nothing has helped. Cymbalta 60 then 90 and then back to 60 has not work - been on it for 2 months. Gabapentin made the pain worse. Ultracet made me throw up and only worked for 90 minutes.

My drs are running out of options. MRI for brain and ankle have been fine. Doing an MRI on neck soon. However with the blood work all coming back with nothing they are running out of things to test me for.

Anyone have any advise or suggestons or knows someone in a similar position?

Thanks

vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 1/13/2010 6:52 AM (GMT -7)   

Hi, and welcome.  As I am sure you will hear from other members, extensive testing for other disorders are always done before a definitive dx of fibro.  It sounds like you have had the blood work (ANA for autoimmune, RA factor, sed rate etc) and they were all normal.  Many of the symptoms you describe could point to fibro...did your doctor even mention the possibility?  If you read through the posts on this forum, so many doctors still do not believe this conditon exists and it is good to find a good rheumotologist/neurologist to confirm your suspicions. ( a fibro literate doctor).

My son had EBV and had a fever, swollen glands and a sore throat for months.  These are common red flags for Epstein Barr.

I also am wondering about the Cymbalta...side effects of any SSRI or SNRI can give you some of the symptoms you describe...the dizziness, shortness of breath, blurred vision and even muscle aches and pains.  I know because I was on Lexapro for two years and did not attribute these symptoms to the drug until I weaned off.  I thought it was just a worsening of my fibro symptoms.  NOT!  I'm not implying that this is your problem but is just a thought and would ask you doctor about it, especially with your sensitivity to drugs in general.

Good luck in getting the answers you need and keep us posted.

Donna

 
fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 1/13/2010 7:46 AM (GMT -7)   
Hey Teacher
 
I too teach.  We share many of the same symptoms.  I feel for you.  I don't have constant pain but all the rest and you could be talking about me.  I hope you get some asnwers and some good treatment soon!  Welcome to the board.  I know you will find friendship and support here.
 
I am glad you posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 1/13/2010 9:15 AM (GMT -7)   

Hi, and welcome!  You have gotten some good ideas and help from our members.  You do need to rule out other illnesses before fibro is diagnosed.  It has many of the same symptoms as other illnesses.

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibro, including a list of symptoms as well as a link called What Else Could It Be.  You will learn a lot there and that may help you, too.

Don't hesitate to ask questions because we are here to help you.  I'm so glad you found us and joined in and I hope to hear more from  you soon.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


TeacherinNYC
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/13/2010 9:46 AM (GMT -7)   
When I told my parents about the EBV being high...they said that I had never had it. I can never remember a time that I had a fever, sore throat, and swollen lymphs as far back as I can remember. So unless I got it before the age of 6/7 and my parents are misremembering I got it somehow but didnt havbe the symptoms OR could it be an indication of CFS?
 
I had all the dizziness/headaches/vision issues before the Cymbalta. I feel like the Cymbalta might be making some of the issues worse however my neuralogist doesnt want to take me off of the drug just yet.
 
My rhemuatologist agreed with the fibromyalgia diagnosis of the neuralogist BUT he said that my severe joint pain/pressure point pain was not what he usually saw with people who had it. He also said it could be the small nerve neuropathy could of triggered the widespread pain but it didn't explain upper back/neck pain or the numbness. Neither did the Fibromyalgia.
 
As far as I know they have ruled out everything. Feel free to throw out names. I was tested for 40 different things and a 24 hour urine test. The doctors loved my stats.
 
Only turning to online sources because, while I think my drs are good, they are at the grasping of straws stage. I have had to take leave of absense from work, I cannot travel to work, I barely function as it is with my daily activities. I am preparing to apply for disability due to my limited mobility/movement/thinking/and pain but not sure how that will work out.
 
Just overall just frustrated. 27 years old, sprained my ankle walking about manhattan (just walking, didnt trip or anything) and ending up like this confused

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 1/13/2010 10:07 AM (GMT -7)   
People with fibro have the numbness and tingling...especially in the hands.  Nearly everyone had back, shoulder, and neck pain.  I read somewhere that the pressure points aren't always accurate, either.  Since I take ibuprofen and Tylenol, the test definitely isn't accurate for me because these have helped keep fibro under control for me.  That and malic acid/magnesium supplements and vitamin D3 supplements.  Many with fibro seem to be deficient in these.  I live in Florida and never dreamt that I'd be deficient in D!
 
As far as the testing goes, perhaps there was a mistake made with the EBV test.  Anything is possible.  But, it does sound like they are ruling out other illnesses.  Also, people with fibro are all different.  We all have different symptoms and different intensities of the pain.  What works for one doesn't necessarily work for another.  You just keep trying things to see what works for you.  There is no real pattern to fibro...except we usually hurt more if the barometric pressure changes.  Have you noticed that at all?  Cold weather causes us more pain and humidity causes many to have more pain.  We do love heat!  LOL
 
If you have fibro, it is really important to keep moving.  If you sit or lay too much, you will be stiff as a board and the pain will be worse.  There are some gentle stretching exercises on Fibro 101 that really do help.  Also, find a gentle exercise that you can do.  For me it's walking and swimming.  When I started out walking, I could barely go four houses down.  Now I walk a mile with my dog before breakfast.  I feel soooo much better.  So keep moving.
 
Well, I need to leave.  I'm heading for my monthly gentle massage.  Those really help me too.  Keep asking questions and we will help you as much as possible.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


gottogetbetter
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/13/2010 5:23 PM (GMT -7)   

My heart goes out to you. From your description of having pain all over, fibro (fibromyalgia) is definitely a possibilty. In my case I am also tired, like a lot of people with fibro. As for advice, I can only tell you that what worked for me was changing the way I eat. I eat mostly a vegan diet, which really helps fibromyalgia for many people.

Whatever you do, don't let anyone convince you that it's all in your head. I got that type of response for years until I figured out how to help myself. Good luck to you.


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 1/13/2010 6:00 PM (GMT -7)   

I have numbness sensations and tingling in my legs, back and sometimes my arms.  When I was first looking for a dx, I was told I did not have 'enough trigger point pain' and was dx'd with myofascial pain syndrome with a possibilty of fibrotitis...which was the old term for fibromyalgia.  Very confusing.  Now I leviate when those trigger points are pressed.  I guess I am just saying you shouldn't allow a doctor to rule out fibro just because you don't scream in pain when the points are manipulated.  I have a friend who is on disability for fibro and she only has only two sensative trigger points.  Everyone is different, the pain migrates and new symptoms can crop up every day.  I never experienced rib pain until this year, and I've had this disease for twenty years.  I have also gone for long periods of time(serveral years, actually) with hardly any pain at all, which is not typical of fibro.  Just makes you wonder...

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


TeacherinNYC
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 2/17/2010 7:57 AM (GMT -7)   
Hi all,

sorry that I havent written in awhile.

So to continue from above - this is what has been happening.

I started to have a dizzyness/lightheadedness/head ripping apart feel (yes all 3 at once, best way I can describe) if I move too much. Muscles have been getting more stiff, esp if I am bending over for a period of a few second or so. Also if I talk too long/chew too much my jaw begins to hurt a lot.

Sudden switch of temp. means a burning pain (like someone is burning my skin or fingers off with a blow torch) doesnt matter hot or cold.

Currently doing aqua therapy but it isn't doing anything but make my muscles not stiff for about an 1 and a half.

Was taken off the Cymbalta because it definately wasn't working. I was put on Savella. Good news: It was working at the 25mg to 50mg right away. Bad news - that low dosage made me into a violent person who almost assaulted his wife and kids so I stopped it.

Seeing a new rhemuatologist that my rehab dr wants me to see who specializes in fibromyalgia. Rehab dr acknowledges that all my pressure point pain and such seems to be fibromyalgia. However she is concerned with my mental issues (thinking, concentrating,etc) and the severe pins and needles/severe pain at holding objects don't line up with her experience with fibromyalgia and wants me to have 2nd opinions.

Finally saw a pain dr yesterday. Gave me a cordizone shot in my hip to see if that could help out leg: It hasnt.

Put me on Oxycontin 10 mg. 2nd day of being on the pill (once a day).No effect on my pain at all.
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