Author Topic: My foot is on fire!  (Read 1872 times)

Shashi11962

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My foot is on fire!
« on: May 09, 2010, 11:00:23 PM »
I'm getting really tired of this. My left foot and left hand feel like I've stuck them in boiling water, and the burning is getting aggravating! I'm already taking 1200 mg of Neurontin, but it's not helping much. Any ideas on how to put out the flames?

syng4hym

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Re: My foot is on fire!
« Reply #1 on: May 10, 2010, 04:44:26 AM »
My dad has a rare type of neuropathy called CIDP.  He takes Amitriptyline and Lyrica which is the newly improved Neurontin.  Hope this helps. 

Joe S.

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Re: My foot is on fire!
« Reply #2 on: May 10, 2010, 05:27:00 AM »
Idon't know but you might try a foot patch detox or chelation therapy.
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inga

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Re: My foot is on fire!
« Reply #3 on: May 10, 2010, 08:26:38 AM »
It is possible it is small fiber neuropathy.  If you have not had a skin biopsy for nerve density, I would have that done.   The only treatment is symptomatic, and it is Lyrica, Neurontin or other antiseizure meds, the tricyclics antidepressants such as the -triptyline drugs (which often cause a lot of problems for SjS patients due to the highly anticholinergic effects), Cymbalta which is a form of the serotonin reuptake inhibitor drugs, or the old standby, opiates, which mess with your gut.  None of them work totally, but can take the edge off.

Treatment is still experimental and has yielded mixed results.   If it is inflammatory,  IVIG, but it is hard to get that prescribed or paid for.  The jury is still out on IVIG.  I believe it has kept me alive so far, but my disease is progressing, even with it.

Rituxan is a monoclonal antibody 'drug' or biologic, and it too is still 'experimental' and some others on here have had experience with it.  Jury is still out.

Sometimes steroids can put a halt on it.  Mixed results.

SjS is unique among the connective tissue diseases in that it has a very strong link to PN....altho ALL CTD has some link to PN.  SjS is unique in that it is the only CTD that is deemed as 'secondary' to other CTDs.

The other thing to watch for with this burning, could be Raynauds.

If you do have small fiber neuropathy, it is a good idea to see if it affects your autonomic system.

Shashi11962

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Re: My foot is on fire!
« Reply #4 on: May 10, 2010, 08:51:35 AM »
Inga, if it is small fiber neuropathy, in what ways would it affect my autonomic nervous system? I've already noticed that I'm not perspiring again. (I had the same thing happen when all my symptoms first started back in the summer of 2006.) Could that be related?

Carolina

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Re: My foot is on fire!
« Reply #5 on: May 10, 2010, 09:01:17 AM »
Wow Shashi,

I just have the burning on the sole of my right heel.  It is awful.  And it isn't constant.

You have it for entire foot and hand?   That has to be unbearable!!!!

I have PN, which I assume is the cause.   I don't know about small fiber exactly I guess I need to read up on it.

Here is what the report said:

Profound axonal neuropathy, right ad left peroneal and tibial nerves.
Peripheral Nueropathy, Rigth and Left Peroneal and Tibial nerves
Right and left sural nerve neuropathy.

I've never tried to understand exactly what that means and what the different types of neuropathies are (small fiber,sensoral, whatever!).

I guess I need to try now, since there are so many types.

I guess this means more google and reading more carefully.

Carolina
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