This question is geared towards those with nerve pain (tingling, stinging, burning) sensations.
I have it most pronounced in both feet and hands after said appendages make constant contact with ANY surface for a few minutes. In the last year these problems now affect my rear-end and parts of my back along the spine - it's absolutely maddening and I've not be given adequate relief at all
For the last 3 years it was 'assumed' by MDs that I have 'peripheral' neuropathy
Had a skin punch biopsy last month that says I do NOT have peripheral neuropathy.
Does anyone who has a defintive Lyme or co-infection dx have neuropathic pain coming from the CNS (Central Nervous System), meaning brain and/or spinal cord?
If so, how was this proven?
Thanks for any help...
Posted by hopeforhealth (Member # 23673) on :
I am interested in this as well as I also suffer from this and it has been horrible lately.
Posted by maps (Member # 19758) on :
I get exactly what you described but it has not been confirmed.
I have suffered terrible left flank pain for two years. Since my mri showed severe white matter disease they are now telling me that it is peripheral neuropathy.
Over the last couple of months it has become increasingly difficult to sit in a chair, need to have my legs elevated as hips, pelvis and abdomen are too painful. Now it has started going up my spine.
The last ten days it has been getting really bad and sometimes I would freeze up. When it gets unbearable I lay face down on the couch with a heating pad, to get up i have to slowly move my legs of the couch and into a kneeling position and then I am able to use the couch to get myself up.
On thursday when I got to the kneeling position I was totally unable to move, my spine locked up and the pain was so bad. I spent about 45 minutes like that until I finally called 911.
Of course the fire engine has to come with the ambulance, they were all very nice but were getting a little frustrated because they just wanted to pick me up and put me on the bed a it was too painful, finally I got them to stand each side and keep my back balanced while I made it to a sitting position. Then four guys lifted me up to the stretcher and off to the hospital we went.
For the very first time I was treated with respect and not thrown out with a tylenol three. They gave me a morphin drip and sent me home we a perscription for morphin. As I was in so much pain I was a little confused and when the doctor said I guess you have had a chest and abdominal exray I said yes, the trouble was that was over two years ago.
I am planning on seeing my GP and will ask for the xrays and also a gyno appointment to make sure.
I am also schedule for a ct scan of my spine. So hopefully I will be able to give you better information later.
But yes up until thursday no one seemed to take the pain very seriously
Posted by hopeforhealth (Member # 23673) on :
I am interested in this as well as I also suffer from this and it has been horrible lately.
Posted by mattnapa (Member # 26414) on :
I am throwing out hate idea if this stuff is caused by M.S, then what do folks think about the Klenner protocol. Or even if it is M.S caused by Lyme's might the Klenner protocl still be effective. I have symptoms similar to those here, but main is more tingling and nubness and not a lot of pain
Posted by maps (Member # 19758) on :
Two neurologists have said that my lesions nor the symptoms not even remotely similar to MS.
I don't know anything about the Klenner protocol but the general treatment for MS is totally contra-indicated for lyme.
I had much more tingling and numbness before being treated, now the pain is much worse.
One glimpse of hope that it is getting better and not worse is that a part of my leg has been numb for years and since treatment I have had all kinds of pain in that area. The neurologist stated that it may be nerve regeneration, lets hope.
Posted by BHealthyNow (Member # 22537) on :
I have been diagnosed with peripheral neuropathy by both my neurologist and my LLMD. I've never had a test though, so maybe it's not really that. I have had MRIs that show no white matter lesions. And my LP for MS is negative. I'm not really sure this helps at all.
Out of curiosity, what would change if it was CNS v. peripheral?
Posted by MDW005 (Member # 22706) on :
Good morning MBB3,
I have the symptoms you speek of ,less the "rear end."
The only thing that has helped control the burning and tingling (I didn't say it was gone) for me is :
Magnesium Omega 3 Tumeric formula(organic tumeric w/ginger) Ester-C lots of water
And I stay out of the hot sun... creates swealing for me; which in turn equals more pain.
I also use cold pacs to keep the inflamation down.
So sorry you are going through this.
Posted by greengirl (Member # 25316) on :
I have pain in my spine, flank, tailbone areas, too. Feet pain comes and goes, now that I'm on treatment (never had foot pain before). Just started treating lyme and hope it all goes. I have treated CNS with antidepressants, lyrica and the like, but never with relief of pain. If you mean by testing, I do not have a definitive TBI dx, but I've ruled out just about everything else. LLMD said TBI could explain the pain, especially because I've ruled so much else out. Time will tell.
One thing that helps me with the symptoms are Icy Hot patches. I have the roll-up kind on my entire spine, right now and use the squares when I have less pain. Of course, not a cure...
Posted by psr1 (Member # 22957) on :
Have you tried Neurontin? It is specifically for nerve pain, and it helped me tremendously.
Posted by gmb (Member # 23562) on :
Piercing nerve pain at night was my earliest sever sympton. Tingling and numbness got so bad I could hardly drive 15 minutes and had to pullover and walk it off. Gabapehten (sp?) helped dull the pain. Nothing else except vicodan or oxychonton would help.
Posted by LA (Member # 26353) on :
I don't have pain but I have numbness, twitching, and occasional electric shock feelings. I am still going through testing for Lyme and the neuro stuff. I have trouble walking because it feels like I am walking on 2 feet that have both fallen asleep and won't wake up.
Posted by txgirl09 (Member # 21612) on :
LA, I'm having many of the same symptoms as you. Terrible twiching and electric shock feelings. So frustrating.
Posted by steven (Member # 13101) on :
also have chronic burning pain in spine, arms and head. must come from the cns. since mrt was alsways fine i cant prove it.
Posted by Dawn in VA (Member # 9693) on :
Have you tried methyl B-12 shots? Two LLMDs I've been to say it's neuro-protective, preserves myelin sheath, as well as promoting detox if you have a methylation cycle mutation/deficiency.
Posted by MDW005 (Member # 22706) on :
Great suggestion Dawn.... I forgot about that one I take the B-12 and it also helps.
Posted by Beachinit (Member # 21040) on :
Magnesium and dextromethorphan are helpful for me. If in the feet I put them up in the air for a while and that helps more than I thought. Makes me think the problem is circulatory in very tiny blood vessels (vasi nervorum) that supply the nerve axon with nutrients.
Posted by davidx (Member # 8326) on :
The skin biopsies would show whether or not you have small fiber neuropathy and an EMG study would look at the large fibers.
If you don't mind sharing, what were the actual results of your biopsy?
I have had very similar symptoms and I would say that the treatment that has helped me the most has been IVIG.
Maddening might be an understatement for how it feels...as it is practically the worst sensation I have ever had so I totally understand how you feel.
Posted by kramer (Member # 15194) on :
Sorry to hear of your problems . This sounds so similar to my symptoms i could have wrote this question myself. I have had severe foot pain now for almost 3 years and sorry to say little releif. I am pos. for lyme and have been on abx for two years with only moderate releif. The only thing that helps me is tramadol. My symptoms went on for a long time before any lyme test was done so i fear my nervous system has been damaged permantly. I have very mixed feelings on any benefit ive gotten from long term abx. although i feel i have nothing to loose my continuing to take them. I hope you have a much better outcome and hope that maybe any others with success stories can offer encouragement
Posted by kramer (Member # 15194) on :
I also should have stated that my nerve conductivity test was negative and brain mris [5] are abnormal but stable for last 13 years. neurologists ruled out ms . Some call my symptoms peripheral neuropathy some term it r.s.d
Posted by mattnapa (Member # 26414) on :
BHealthynow- If it was localized topicals might be effective, but if it was CNS they would not. Also I thoght I read somewhere that b-12 could be deleterious util Lyme is dealt with to some degree, but I cannot say where I read that. I stil think Klenner might be the avenue for some folks with neurological symptoms that have not been helped by treatment. In my opinion the diagnosis of M.S is pretty ambigious, so people not diagnosed might still be helped
Posted by renny1985 (Member # 25222) on :
I have severe severe nerve pain down my right leg (and occasionally my left). It feels like it originates in my lower back/hip.
![[Frown]](frown.gif)