[lynnj1602]

Does anyone have peripheral neuropathy pain that extends over their entire body?

My small fibre neuropathy started in one foot about 10 years ago and has progressed to cover my entire body including face and neck, chest, back, abdomen, arms and legs.

Pain is not usually continuous in all areas at once but can be in several areas at one time.......it seems to move around.

I am also diagnosed with Frontotemporal Dementia and Parkinsonism.

I was taking Gabapentin then Lyrica. Now I am on a combo of the two and it is not helping.

Do any of you have pain all over their body?

If yes, what are you taking for it?

Lynn

[nide44]

Just 'pain' is not enough info. What type of pain? Sx?
Do you have G.I. problems? Twitches or tics?
Facial, scalp?
Need more info.

[lynnj1602]

Originally Posted by nide44

Just 'pain' is not enough info. What type of pain? Sx?
Do you have G.I. problems? Twitches or tics?
Facial, scalp?
Need more info.

Yes Bob, I have all of the above.
I have Gastroparesis. (I have had a sweat test and it showed abnormal sweating over the abdomen and legs in 2002)
My pain includes burning, cramping type pain, and knife like pain. Two different types of pain can be happening at the same time.
I have burning to the face and scalp areas at times.
My whole body's skin surface has a numbness to it - this does not go away.
My feet are more numb and as if the numbness goes through the entire foot including muscle - (not just the skin as in the rest of my body).
I have fasiculations at times on my legs, arms and abdomen.

I have had numerous EMG's and NCS - the last one showing that I do have a small fibre neuropathy with axonal involvement.

Lynn

[glenntaj]

--that began on April 12, 2003, was at high levels for many months (though Neurontin provided some relief) and that, according to a series of skin biopsies to measure small-fiber intraepidermal nerve density, has been slowly resolving since then (the skin biopsy was the ONLY test to show anything abnormal, and I had a collection of over 100 pages of test results by then).

Cause has never been determined, though an autoimmune post-infectious molecular mimicry process was/is suspected, What kinds of autoimmunity tests have you had (not just ANA related testing, but those for antibodies to nerve gangliosides and other nerve structures)? How did this present (acute, sub-acute, more gradually)?

Do you have definitive small-fiber damage? Generally, one cannot use EMG/NCV studies for that, as they only measure larger, myelinated nerves--one generally needs specialized testing (the gold standrad being skin biopsy, of others such as quantitative sensory or sudomotor axon reflex studies, which is what I think you mean by the sweat test--and yes, autonomic neuropathy is of the small fibers, so the gastric problems do point to that as well).

This definitely sounds autoimmune, though long-term toxicity or vitamin/mineral deficiencies should also be investigated. You should take a look at the Liza Jane spreadsheets--www.lizajane.org--these were designed to be about as comprehensive listing of test for neural symptoms from whatever cause as could be compiled form current medical knowledge, and see what you have and haven't had done. (They're also good for tracking test results over time and finding patterns.)

[lucylou]

Hi Lynn,
I have just joined the chat room, I was interested in your posting, as I have neuropathic pain in multiple parts of my body too, almost always when pressure is applied to the body part. When I sit, my buttocks and back of upper thighs really hurts, when I lean on my arms, elbows, pressure on back and standing on my feet. It started with just my feet and over about 10yrs. has progressed to this. I do not have diabetis or any other disease that is typical to have neuropathy.
I am taking Lyrica and Cymbalta, there is some help but not much. Every so often I stop the meds. because I think they are not helping,but find out how much worse it really is.
Please tell me if your pain is caused by pressure.

Thank you,
Lucylou

[Sheltiemom18]

Lynn,

As with Glenn, I also had acute onset burning neuropathy in many areas, although a few were "spared" and remain that way. That was January 2010. Diagnosed via skin punch biopsy with non-length dependent small fiber sensory neuropathy. Was unable to tolerate any of the so-called silver bullet meds so have pretty much gone cold turkey.

Can tell you, though, that there has been significant improvement in some ways. The bad burning has stopped except for very small areas now and then and only for very short shots. My scalp and face were also involved. Have been able for a few months now to wash my face and hair without discomfort. Still can't shower - feels like needles. Wind, heat and sun are bad news. Still cannot wear most of my "old" wardrobe - even the softest of those fclothes feel like burlap.

From what you describe, I would guess that you might have Sjogren's Syndrome, but a good internist or rheumatologist can best Dx this based upon certain blood work or even clinical findings. Sjogren's Syndrome , an AI disease, has a number of neurologic components, small fiber neuropathy being only one of them, as well as autonomic/CNS involvements. I was diagnosed with it in February.

[lizziebeth]

I also have body-wide sensory neuropathy. I'm 51 years old and was in good health except for hypertension which resolved after a 40 lb weight loss. I was probably in the best shape of my life-eating right, exercising consistently and managing stress well with the help of yoga when I started to develop pins/needles in my feet in the Spring of 2008 followed by tingling in my hands in 8/09. The symptoms in my hands/feet waxed and waned. I tapered off of Paxil after having taken it for 9 years in 3/09 thinking that perhaps my symptoms were Paxil related. In April of 2009 I developed tingling in my right posterior hip area. In early 7/09,I noticed tingling in my face. By 10/09, my symptoms had become body-wide, initially mostly pins/needles, tingling with some burning and cramping. My feet have progressively become more numb. My symptoms have waxed and waned and I was able to tolerate them without meds (although I've been doing numerous supplements per the great info on this board since 10/09), until 3-4 weeks ago when they greatly intensified. For several weeks prior, I began to have difficulty sleeping due to pain associated with compression of my limbs and back. This was followed by increased burning and frequent shooting pains. It was at this point that I started Neurontin which has provided some relief as I've titrated it upward. I've had no evidence of motor involvement on the 3 EMG's that I've endured (last done 1/10). Emg's have shown mild reduced SNAP's without significant change between studies-7/09,9/09 and 1/10. A skin biopsy done at only one site (my lower calf) was reported as "0". I have seen 4 neurologists, all associated with Boston teaching hospitals (including Mass General) and have had an extensive lab evaluation along with a head CT (I can't have MRI's metal orbital implant), small bowel biopsies and a fat biopsy (I had developed GI symptoms which in retrospect were stress related). The 4th neurologist , with whom I had my first visit this week, thinks that my clinical picture is consistent with an autoimmune process. She also spoke of a neuronopathy vs. mixed axonal neuropathy. She ordered an ANA and a sed rate, both of which were WNL in 7/09 and 9/09. In 7/09 I had cytoplasmic neutrophil antibodies,phospholipid antibodies, cyroglobulins, MPS and immunoglobulins, ANCA/paraneoplastic panel. In 9/09, SPEP was normal pattern, immunoglobulin quantitatively normal, negative ant-double stranded DNA antibody, negative anti-Ro, anti-La, anti-Sm and ant--RNP. I've also had negative results for all the usual/and not so usual suspects. Glenn, have the tests I've mentioned included those you mention in reference to antibodies specific to the peripheral nerves? If not, what are the specific labs I should ask for? Right now I'm scheduled for my 4th EMG on 9/10. A few weeks ago I had what appears to be transitory weakness of the left 2nd toe, so we'll be looking to R/O any early motor involvement. If there is motor involvement (or if my sed rate or ANA are significant/?ing vasculitis), a nerve biopsy will be considered- something I've been very reluctant to consent to. Glenn, any advice would be greatly appreciated. Thanks.

[echoes long ago]

Lucylou have you ever looked into HNPP herditary neuropathy with liability to pressure palsies? here is a site that lists symptoms http://www.hnpp.org/hnpp_symptoms.htm

[Kitt]

I was wondering the same thing. It might be worth a look.

[glenntaj]

--though it's not as typical for the hereditary neuropathies to hit with a sub-acute onset, as yours seems to have (though, admittedly, the presentation of hereditary neuropathies is highly variable).

It does sound to me, though, as if your situation is more likely due to either a toxic or autoimmune dysfunction (and toxic can include prescription drugs, not just the usual suspects like heavy metals or organic solvents).

You have had a lot of testing--Mass General has a good department when it comes to neuropathy investigation--but I did not see the testing for metals or for the antibodies specific to peripheral nerve in there. The Liza Jane spreadsheets at www.lizajane.org have these, and Dr. Latov's Quest Laboratories application paper also lists them:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Often, in these sorts of situations, when the standard rheumatological antibody tests don't show anything amiss, the more advanced nerve antibody tests are indicated (and not a lot of rheumatologists are familiar with them).

And, yes, it's good that the neuronopathy--that is, attack on the cell bodies themselves in the ganglia, not just the fibers--has been mentioned; this does seem to happen in a certain percentage of fast onset, body-wide neuropathies, often due to Sjogren's, or, unfortunately, to cross-reaction with substances produced by tumors (I would think the anti-Hu, anti-Ri, and anti-Yo tests shold be done, and a survey for tumors considered, just to be safe--I had all these done but I had to go to Cornell-Weill for the doctors to know what I was talking about--no positives, fortunately, and now it's 7.5 years later).

A significant portion of these acute-onset neuropathies wind up being idiopathic, with autoimmune mechanisms suspected, but hard to prove--you may be producing antibodies unique to your nerve structures. That is, unless, you had some sort of traums that would point to compressive causes, especially in the spine. Unfortuantely, spinal compression, or even compression of multiple spinal nerve roots, can produce symptoms that "feel" exactly the same, and it's one reason a series of MRI's is often an early step in these kind of cases--and it's an opportunity to check for central nervous system demyelinating diseases such as MS as well.