Severe Burning Pain

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New Member

Date Joined Feb 2011
Total Posts : 6
   Posted 2/13/2011 1:31 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. 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 (a massive overdose of Levaquin) that caused nerve pain and believes that these were all MS episodes. I know that that I did, as both medications have neuropathy as a listed adverse effect. 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 didn’t think that I was going to survive yesterday it made the pain that intense. I was also on Neurontin and while it helped slightly with the nerve pain, the other side effects were severe.

Has anyone ever experienced any 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. Well, I haven't and cannot function like this.

I also have POTS (postural orthostatic tachycardia syndrome) which I developed after Levaquin, which makes me very sensitive to all meds (hence the nerve pain response to pharmaceuticals). I seem to be growing a tolerance to the pain medication and the doctors are hesitant to even prescribe me anything for the pain. How can they ethically let me suffer like this? I am obviously not a drug seeker. I have a tiny child at home that I need to care for and they seem to be using my PPD diagnosis against me, as if I cannot distinguish between pain and anxiety. There is a BIG difference. Besides, I had been doing so well with my PPD when all of this started. I didn't even need to take the Zoloft. There were a lot of stressors (moving across the country with a 2 month old, husband starting a new position, moving very far away from friends and family, etc) that precipated this. I have a history of PTSD from a previous traumatic event and I am sure that anyone in my position would have felt the same way and possibly not handled it as well as I did.

The strange thing is that I had the nerve pain first on the Zoloft, but it went away immediately after I stopped taking it. I hadn't taken it since the end of November when this neuropathy appeared in January. Although for the two days before this new pain started I had felt a little more nervous than usual and had taken a Klonopin. Can Klonopin mess with your neurotransmitters so much that it can create symptoms like this?

Please help!!! Has anyone else experienced anything, even remotely, like this?

Veteran Member

Date Joined Oct 2009
Total Posts : 5028
   Posted 2/13/2011 2:36 PM (GMT -6)   
Sorry I won't be much help, but I do believe you.
I had a horrible stomach ache from Zoloft that lasted 24 hours.  I don't tolerate most of the other meds you are on either, and have gotten tolerant to Vicodin, so I save that one for after surgeries.
Sometimes less is more, at least it is for me.  The best overall pain med for me has been tramadol, which isn't even very strong.  It doesn't take away all the pain, and it doesn't last more than about 4 hours, but at least it helps and I have developped only minor tolerance to it.  There is an extended form, but it doesn't work as well.  I take that one at night.

New Member

Date Joined Feb 2011
Total Posts : 6
   Posted 2/13/2011 2:56 PM (GMT -6)   
Thanks, Alcie. Sometimes I feel like I am going crazy and then at other times that I am the only sane one left. I just wish I could get to the bottom of what is causing this intense burning pain. It feels like I am literally burning alive.

I tried Tramadol for this nerve pain, and while it worked for me in the past, it cannot touch this. I am taking Lortab 10 mg/375 halved every 3 hours and still my pain level is at like a 6. The doctors want me to keep trying all of these other drugs, which I cannot tolerate and I worry that they don't understand how badly I am hurting.

spinal soldier
Veteran Member

Date Joined Dec 2009
Total Posts : 687
   Posted 2/13/2011 3:53 PM (GMT -6)   
did any of your doctors bring up TRIGEMINAL NEURALGIA as a possible cause for facial neuropathy?

New Member

Date Joined Feb 2011
Total Posts : 6
   Posted 2/13/2011 4:34 PM (GMT -6)   
Trigeminal Neuralgia was posited at first, but the pain is absolutely constant and bi-lateral. It started on the right side near the mandible and then spread across my chin to the left mandibular area up to my cheekbone, which is where it is concentrated now. I also have nerve pain in my hands and it radiates up from my shins and into my upper thighs. It doesn't fit with TN, especially with have the pain in other areas.

Post Edited (perlgrau) : 2/13/2011 2:49:45 PM (GMT-7)

Forum Moderator

Date Joined Feb 2003
Total Posts : 16783
   Posted 2/13/2011 8:08 PM (GMT -6)   
Hi Perl and welcome to to Healing Well's chronic pain forum. I am sorry that you have to be here but glad that you found us.

Have you thought about getting a second opinion with another neurologist? I sure would, especially with the radiologist reading your film as he did. You mentioned poor quality scan, was there a reason to make you think it was poor quality? If this scan was of poor quality then I would ask for a repeat with contrast at another facility. I know MS can be difficult to dx. I would make an appt with my PCP as soon as possible and tell him the report is being read as negative but this neurologist thought he saw differently and ask to be referred for another opinion.

Unfortunately, most of the pain medications have little effect on nerve pain that is why you are not getting much relief. There are other meds out there for nerve pain, like Lyrica, Cymbalta to name a couple. You said you stopped Neurotin because of side effects. Most of them come with side effects that lessen over time.

Is there a chance that a family member or friend could come and stay with you for a bit to help you out with the little one? I can understand that you need to be on your toes taking care of a little one, but with just about any medication there is always some sort of a side effect. Most of the meds used to treat nerve pain has to be slowly increased over time until they get you on the correct dosage.

Other than this I really do not know of much else to help you out. Perhaps maybe going to a teaching hospital. They are very thorough and they sometimes find things others totally miss, just a thought anyway.

Anway. I wanted to pop on and tell you welcome aboard. Take care and please come here and post to let us know how you are doing.
Moderator Chronic Pain Forum

New Member

Date Joined Feb 2011
Total Posts : 6
   Posted 3/6/2011 6:54 PM (GMT -6)   
Hi all,
I wanted to post an update. I have since figured out that the burning neuropathic pain was actually the result of a protacted and severe Klonopin withdrawal. My doctors are still investigating me for MS, but I am convinced that this is what is really going on. We all know how doctors love to deny that drugs have side effects. I know this first hand from my Levaquin experience and I am shocked that is happening to me again.
I am still taking Vicodin for the pain, but in the last week I have been able to more than half my dosage! This is a huge improvement and I think that I will be able to recover from this, as long as I avoid pharmaceuticals and known aggravators for a very long time. The emotional trauma and damage is another story... My first priority when I am feeling well enough is to get into therapy at least twice a week to resolve some of my issues so that I never have to rely on benzos again.
Thank you for all of the support. It really meant a lot to me when I was so terrified and in pain. I hope that everyone is able to see some improvements in their own conditions!!

Veteran Member

Date Joined Mar 2011
Total Posts : 1276
   Posted 3/6/2011 8:12 PM (GMT -6)   
Hi perlgrau - my problems are different to yours - I have Complex Regional Pain Syndrome - but this too causes horrendous nerve pain. I get by on a day to day basis, but a bad acute flare is enough to have me vomiting and struggling to stay conscious so I can empathise with what you have been through.

Even though this is our first time 'meeting' I am so glad to hear that you are improving, and I hope that it continues for you.

Take care,

Regular Member

Date Joined Jan 2011
Total Posts : 230
   Posted 3/7/2011 12:57 AM (GMT -6)   
Perl, have they done a nerve test on you yet? It's a test a neruologist can do to make sure youre nerves and functioning properly. Whether or not they're misfiring is another matter, but at least it can narrow it down.
Also aside from MS, which you're right, has all sorts of other funky issues you're not experiencing, has your doctor consider fibro?
As a Mom myself, the best thing you can do is try to take deep breaths, do not let your panic get to you... I know it may seem like mission impossible at times, but try to focus instead on the little things; you newborn's smile for instance. Sometimes they little things help get past the big things, and make the day to day alot easier to deal with.
Like Laura, above, I too suffer from CRPS, so I can appreciate pain and pannic attacks brought on as a result. Today alone I was nearly in tears, but not because of my pain, but because of the side effect of all the narcotics I've taken; my mind is not as sharp as it used to be. I couldn't remember where I put my soft neoprene brace. I knew I'd worn it earlier in the week, but I couldn't find it and I quickly turned the house upside down for it; still, nothing. Eventually, after nearly bawling my eyes out and beating my head against my dresser I was able to force myself to think about that one memory I had of when I had it on ... seeing if my jacket would fit over it ... and I could pick out what day that was, which in turn triggered a whole flood of memories and I finally found it.
I've been on (as I called it) NerRotten as well as lyrica and cymbalta, but they didn't work for me for one reason or another. Everyone reacts differently to medications which is why they have those warning labels. While some may be sleepy, others are wired, and likewise if some end up having great success, others fail. The best thing you can do is keep a positive attitude. When they tell you mind over matter they're not joking. Believe the meds will make you better and see if that helps. I am not going to tell you it's all in your heard, heavens knows I heard that enough in my early stages of doctor hopping during my quest for an answer, and I know all to well how painful it is to have someone you love tell you it's all in your head... to not be believed, but there's also truth to that whole power of thought thing. The mind is a powerful thing, use it.
I believe your pain is real. Now you need to believe too. *hugs* Remember, you're not alone.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant
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