[tmullen]

hi everyone! i haven't posted in a while, but have still been reading. let me fill you in about what i've been doing the last month or two.
i had ketamine infusions over four days, i got relieve in my right arm, but it only lasted about 8 hours. Now were in contact with a chiropractic neurologist up in san Francisco. he says i need to be on a gluten free diet, since gluten is an inflammatory. anybody else been told that?? i was doing the HBOT, i probally had around 70 hours, but found no realive. the place was an hour away from my house, so the drive just wasn't worth it.
over the last week or two my palms have been getting extremely red, sensitive, and the worst burning pain ever!! my right arm has also had the twitching. my rsd is not in my left arm, but is in my right. i'm starting to worry that this monster is really starting to take over my body. on somedays i can't even use my walker becuase my hands, are so sensitive
for those of you that don't know i've had rsd for six years, starting in my right leg crossing to my left up my back into my right arm.

hope this finds everybody doing well

[keep smilin]

Originally Posted by tmullen

hi everyone! i haven't posted in a while, but have still been reading. let me fill you in about what i've been doing the last month or two.
i had ketamine infusions over four days, i got relieve in my right arm, but it only lasted about 8 hours. Now were in contact with a chiropractic neurologist up in san Francisco. he says i need to be on a gluten free diet, since gluten is an inflammatory. anybody else been told that?? i was doing the HBOT, i probally had around 70 hours, but found no realive. the place was an hour away from my house, so the drive just wasn't worth it.
over the last week or two my palms have been getting extremely red, sensitive, and the worst burning pain ever!! my right arm has also had the twitching. my rsd is not in my left arm, but is in my right. i'm starting to worry that this monster is really starting to take over my body. on somedays i can't even use my walker becuase my hands, are so sensitive
for those of you that don't know i've had rsd for six years, starting in my right leg crossing to my left up my back into my right arm.

hope this finds everybody doing well

hello tmullen...

So sorry your are experiencing such palm pain but it sounds much like RSD there also..oh my!! I am also sorry that your infusions did not last nor was the HBOT any help either..Did you have 4 day /4hr. infusions??? You have been trying a bunch of things..I worry the more we do the worse this monster gets..I know with my implant SCS..being placed in..I then had spread..mine too was my rt. leg..over to my left up into my lft. shoulder, pelvis and now rt. jaw...whole body and internal...in 3 years..

You are in my prayers and I am sorry but to answer your question..yes, in my feeling is that seems like RSD in your palms..possibly contact your treating Dr. and get their feeling..

Take care, Kathy

Nice to hear from you!!

[daniella]

I am sorry too that you are not feeling the benefits of those treatments. I don't have a lot to offer. I am in a spread right now and the only thing I am trying to do is stay in the moment and not fear the worst. This is easier said then done but I am trying. As fo gluten on the PN board there is a post and I know you don't have PN well I don't think but anyhow that certain people have a sensitivity to certain foods like what you are stating and can increase pain. You may want to check it out. I wish I could help you more. Hang in there and feel better

[Wilbyfree]

Originally Posted by tmullen

hi everyone! i haven't posted in a while, but have still been reading. let me fill you in about what i've been doing the last month or two.
i had ketamine infusions over four days, i got relieve in my right arm, but it only lasted about 8 hours. Now were in contact with a chiropractic neurologist up in san Francisco. he says i need to be on a gluten free diet, since gluten is an inflammatory. anybody else been told that?? i was doing the HBOT, i probally had around 70 hours, but found no realive. the place was an hour away from my house, so the drive just wasn't worth it.
over the last week or two my palms have been getting extremely red, sensitive, and the worst burning pain ever!! my right arm has also had the twitching. my rsd is not in my left arm, but is in my right. i'm starting to worry that this monster is really starting to take over my body. on somedays i can't even use my walker becuase my hands, are so sensitive
for those of you that don't know i've had rsd for six years, starting in my right leg crossing to my left up my back into my right arm.

hope this finds everybody doing well

Hi Tmullen and sorry to hear about your short lived pain relief. I too have had rsd/causalgia for about six years. The same year I was diagnosed with this I was also diagnosed with Celiac Disease. That is the name for gluten allergies. I have been told that they are not interlinked, but the more I am learning, even from personal experience, I believe that they are. If you are allergic to gluten, you have to go on line and find the diet, there are many, but mainly, I eat protien, salad, certain cheese, many fruits but not all and many of the grocery stores are now selling a variety of gluten free snacks. Once you learn the diet and follow it without cheating...and honestly it is hard to do, you will feel much better as well as reduce some pain. Be patient with yourself, it takes awhile for your body to adjust to the diet, about a year for me, and trying to manage both the celiac and rsd is difficult. When my stomach gets upset the first thing I want is a saltine cracker....NOT... those little habits were actually killing me. You are welcome to PM me if you want more information. Following the diet does help the rsd pain, but more importantly, it can and will make you very sick. Sorry to hear you have this, but you do get use to it and I promise you will feel better.

Best Wishes

Jeanie

[5280Katie]

Severe redness of the palm, particularly the heel (at the wrist, opposite the thumb - mine can spread up to the little finger, and even envelope the entire palm except the center) with searing, burning pain has always been my primary RSD symptom for nearly 20 years. My RSD was initially in my left hand, but it developed in the right maybe 15 years ago.

Have your Drs suggested/recommended Neurontin? It was just finishing clinicals when I got RSD and not available. 2-3 years later, my Mom had a significant stroke. Her right palm was extremely red, her right forearm very swollen, and she was vocal in her pain. No one could even touch her on the right. They diagnosed RSD brought on by the stroke. Her Drs put her on Neurontin and her relief was immediate. When I got home (she's in Oregon), I inquired about Neurontin and have been on it since.

I was originally on 600-900 mg (I think) for RSD management. I am now on 3600 mg daily because of added neuropathy from a recent, catastrophic illness. I'm not aware of any side affects, for me, over the years or from the increases. Perhaps it would be worth your time to ask about it? RSD ranges from a slightly annoying, nipping puppy, to an enraged Grizzly ripping you apart. RSD is exactly like Forrest Gump's box of chocolates. The very best of luck to you.