Severe burning pain

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perlgrau
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/12/2011 10:33 PM (GMT -6)   

I need some desperate help. I was just diagnosed with possible MS based on the horrendous nerve pain that I have been experiencing. It came on suddenly a month ago and has been unrelenting since. It is honestly on a scale of about a 9 without pain meds. I have been subsisting on narcotics for the last month but they are not helping and I am having a lot of breakthrough pain. I have a six-month-old daughter that I have been unable to care for because of all of this.  This has been a nightmare of the most epic proportions.  Honestly, it is sapping my will to live.

Now, I am not sure that I have MS. The symptoms that I am experiencing don’t seem typical with the disease. I have no other symptoms, no loss of coordination, blurred vision, cognitive impairments, etc. All of motor function tests were completely normal.  I only have the nerve pain. The strange thing is that I was put on an anti-depressant for postpartum mood disorders after the birth of my baby and it caused me to have nerve pain, in the same areas that I am experiencing it now. The pain went away immediately after I stopped taking the medication, but came out of the blue about a month later and has not ceased since then. I am wondering if that wasn’t the catalyst for causing serious problems with the neurotransmitters in my brain, in addition to having wacky hormonal things going on, and that is why I am in so much pain now.

I had an MRI done without contrast and the neurologist believes that there are some miniscule lesions. However, the radiologist marked the MRI as totally normal. I am not sure if the neurologist is really seeing lesions or if it is due to a poor MRI scan. The neurologist doesn’t believe that I had an adverse reaction to the anti-depressant and another medication in the past that caused nerve pain and believes that these were all MS episodes. I don’t know what to believe… I have never been so terrified and in so much pain in my life. I have tried Elavil, but it caused a dramatic increase in the nerve pain and I have decided that I will not be taking anymore. I was also on Neurontin and while it helped slightly with the nerve pain, the other side effects were severe.

Has anyone ever experienced MS symptoms of only excruciating, burning, and constant pain that started in your face and radiated everywhere? It is my arms and legs now and I don’t know how to function in this state.

Please help!!!


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3145
   Posted 2/13/2011 10:29 AM (GMT -6)   
Hi there,
 
I am sorry to hear of your misery!!  That sounds awful!  While many with MS have nerve pain to some extent, it does appear to be rare to have pain to the extent you are.  You need a pain management doctor! 
 
There are pain meds out there that can help.  I am not experienced with all the different pain meds. I do have some nerve pain but I generally can treat it with ibuprofen!  I am sure that wouldn't touch what you are experiencing. 
 
You may want to post on the chronic pain board here.  There are members with a ton of experience there.  We have lots of members that post on more than one  board so don't feel like I am encouraging you to leave.  I just want you to have some good feedback, and I am worried you won't get much here.  Your experiences are not typical. 
 
Please keep us posted and ask any questions you may have.  It seems you are questioning your diagnosis a bit.  Have you considered a second opinion?  What your neuro said about the adverse reaction to an anti-depressant sounds plausible.  Are you seeing an MS specialist?  Something to consider.  Your local chapter of the MS society will have a list of MS specalists nearest to you.  Best of luck!!  I can't imagine pain while caring for a baby.

perlgrau
New Member


Date Joined Feb 2011
Total Posts : 6
   Posted 2/13/2011 1:14 PM (GMT -6)   
Thank you.

I think they were going on the fact that I have had nerve pain three times, but they do not accept my explanation that I am very sensitive to meds and have had nerve pain in response to chemicals in the past. It would be quite strange and statistically unlikely to have episodes that were exactly corresponded to when I took pharmaceuticals that have neuropathy listed as a known side effect.

I am now seeing a MS specialist who has yet to review my MRI. I am worried about the fact that MS cannot ever be really ruled out. I am worried that if the doctors are so focused on a MS diagnosis that they won't look at everything else that is going on and will not be able to treat me accordingly.

I need relief from this agony. It has been constant for over a month now and I cannot continue on like this... I tried Elavil and it made my nerve pain increase exponentially. I didn't think that I was going to survive last night, honestly.

Thank you for all of your support and advice. I will post on the chronic pain board and see if anyone has any suggestions.

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/14/2011 9:47 AM (GMT -6)   
I just wanted to wish you luck in your search for answers.  Hormones go crazy after the birth of a child, have you been tested for some of the more simplier explanations?  Diabetes or vitamin defiencies? You describe severe burning is why I suggest it, particularly low b-12 can cause horrific nerve pain.   It is what it is but I would love to hear you say it is something more simple rather than MS.
 
A pain management doctor can help you in the meantime.  If you are unable to care for your child that is a huge quality of life issue and they need to know what it is keeping you from doing.  Medication for pain is largely a trial and error to see what works and what side effects you can handle.  They will usually start you off on the lower stuff like Elavil and work from there.  Best of luck, feel better.

James6382
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/16/2013 8:20 AM (GMT -6)   
Hi ,
Sorry to hear about the burning pain I have it as well on my entire right side from my shoulder to my toes the leg being the worst affected I had been on several medications as this pain doesn't subside in severity it's constantly there I would describe It as being burnt with matches. The last medication I was perscribed for this pain was morphine sulfate 15 mcg which was the only medication that helped take the edge off, it's very safe and I was able to work while taking this medication and I'm a heavy equipment operator in a mine.I noticed as well that If I put pressure on an area that was burning ,the burning would die down so I approached my neurologist and asked him to prescribe me a compression stocking for my leg he had never heard of such an idea but he was intrigued by the idea and eager to see what result it might have so with the combination of the medication and the stocking the pain died down to a scale of 3 out of 10,I did this for about 2 years and April 2012 I stopped the morphine and I took my stocking off because I had found another remedy, exercise!!! The more active I am the less burning I get but when I do get idle time yes the severe pain comes back so between the exercise and sticking which I use when I have idle time I believe I've managed this very well :) I hope that helps you :)

almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 1783
   Posted 1/16/2013 12:31 PM (GMT -6)   
Hi,

I'm new to this forum and thought I would suggest ways to help you out naturally. Is there a special MS diet that might help you? I'm on a special diet for my arthritis pain and fibromyalgia. It's helped me somewhat deal with the pain and burning inflammation.

I see a very good chiropractor and a neuromuscular massage therapist. Maybe you should check out these other avenues?

Good luck to you.
Fibromyalgia, CFS, multiple chemical sensivity, herniated disks, spinal stenosis, osteoarthritis, ADD, sjorgens, sleep apnea, asthma, headaches. The only medication I take is ibuprofen at night to sleep along with my supplements for sleeping. I am on a regiment of different supplements, I eat very nutritiously, and ever since my injury years ago I have been doing prescribed stretches x2 daily.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1637
   Posted 4/6/2013 3:56 PM (GMT -6)   
I usually hang out on other forums but have looked here for some information on what's happening with me now and saw your post. There are usually good meds for nerve pain. Have they tried you on lyrica or neurontin? I am sorry for your pain. I know how awful it can be to be in pain and not get relief. Sometimes I really doubt our version of medicine. Have you tried acupuncture?? That may give you some temporary relief. Good luck.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
seronegative RA, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid,
Positive ANA speckled pattern 1:180, high sed r

Rickybaby
New Member


Date Joined Apr 2013
Total Posts : 2
   Posted 4/10/2013 1:55 PM (GMT -6)   
hi i have ms and have severe nerve pain, the doctor say is small fiber neuropathy, i am on neurotin 300 m.g. three times a day. sometime the burning is so bad it in my face, eyes and whole body. i cant stand for no one to touch me and the palm of my hands turn red. so ask about neurotin
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