Hello all

I haven't written in awhile. My husband suffers with PN. He was diagnosed back in January and not much good has happened since. I have heard from Melody re: Beth Israel Pain Clinic (Arnold Pain Center). My husband's first visit was terrible. It almost put us both over the edge. They have since moved to 1 Brookline Place Brookline & our 2nd visit was very peaceful and went smoothly. Sadly the treatment (lidocaine IV) did not work. We were hoping that it might break the cycle of pain. The pain clinic is looking at that he might not be suffering from typical PN & could be from when he injured his back ... back in September. He is scheduled for another treatment 4/22. But since has had some back pain which when he turns does cause numbing in his foot. So they may do some other type of injection. So we are hopeful. He has been on zoloft for his terrible depression and anxiety. I thought he was doing ok on 50 mg but now it has been upped to 75 mg and he has terrible anxiety. So we are trying to follow up with dr. I guess it all never ends.

Take care everyone.
Eileen

Hi.

You heard about a pain clinic from me?? I dont' remember ever writing this in a post because my husband doesn't go to any pain clinics at Beth Israel. He goes to the Orthopedic surgeon and he had a calf operation there. I have never heard of the Arnold Pain Center.

We have never been to any pain clinic in Beth Israel Medical Center.

Refresh my memory if you can, where exactly did you hear of this Arnold Pain Clinic.

I am so sorry you had a bad experience there.

About 7 years ago, my husband went to the pain management department of Coney Island Hospital in Brooklyn, NY and they gave him the Fentanyl pain patch. That saved his life. The pain was unbearable at the time.

Eventually he was weaned off but he had to go into the hosptial to detox (that's a whole other story, believe me).

I am just wondering where you heard about this Arnold Pain Center.


Melody
P.S. There's two Melody's on Neurotalks. Maybe it was the other Melody who gave you this info????

a 'spinal issue'? But that doesn't make it any easier to diagnose...
That he might be getting anywhere in diagnosis isn't helping your husband NOW tho. And tell him that YES! Depression does come with this territory? !! It's HOW the individual DEALS with it that is critical to how they can or might get better tho. THAT is plain old common sense. You Hurt! You Can't DO what you used to and you take 'pills' to help and you STILL HURT! You find you are able to do less and LESS as this hurt continues and you still hurt! WHAT? I ask you, is there not to be depressed about?
Pain pills don't help, they only constipate you and you find you have trouble even getting outta the bed to go to the 'loo'?
My neuro asks me about 'depression' all the time. I always reply: IF I weren't depressed, THAT would be abnormal! DUH! CITY!
IF from what I've read of your posts, I were your hubby? I would persue that spinal testing route thru the wazoo! Why? It sure sounding like it from what you've said. I'm no doc, but I, must admit, that given my life and activities? I SHOULD have spinal issues and that ZERO, ZIP and ZILCH has shown up in that quarter to connect to my neuropathies. I am always amazed by this as I've had more than one serious 'fall' from a horse onto ground the equivalent of concrete and other than bruises, muscle sprains, and concussions have always come out 'intact'. I've never figured that one out.
BUT you look at Billye's posts [Silverlady] and her lengthy stint on steroids and see what the toll on the bones and spine is there, and ....well... a whole different set of things come into play. All said? We each are different.
All I can say is that I know BOTH back muscle pains and neuropathy pains. There really are times when I can honestly say I'm not sure which is worse? But, the short term - back pains lots can be done. Long term and short term? PN pain not a heck of a lot! Sooo, common sense dictates go check out the back pain aspects then work your way up/down the food chain as needed? Hopefully you won't have to? HUGS and hopes! Truly! - j

Dahlek,
I've not taken steriods for a long period. I have taken methotrexate. Cathie is the one taking steriods. Just wanted to straighten out things here.

But I do agree that lengthy steriod dosing will destroy the bones. That was the first question the orthopedic doctor asked. "Are you taking steriods?" and "Did you take them in the past for any length of time?".

Billye

It is the oral steroids that are actually worse. The injectables are not that bad. I have been receiving injections since 2000. However, not every month; maybe 3 times a year. I had a nuclear bone scan done over the winter which was fine other than OA which I already had to begin with. And a bone density scan which was fine as well. The thing is...you gotta do what you gotta do. The injections and I think people keep forgetting are DIAGNOSTIC as well as therapeutic. Very, very rarely will they continue to give them in the same spot as in "pain management". For me it was injections and then fusions and then facet injections for the lumbar; only twice and then an RF. I try to stay clear of the oral steroids as in the Dosepaks. Only twice have I had HAD to take that. But to be honest it is the injections that have kept me from taking handfuls of meds. Anyway, I DID ask the question if injections worsen OA and they do not. Actually, there is very, very little steroid used and some injections are just numbing agents as in a diagnostic test. It is just that there are times that getting the steroid right where it needs to go is absolutely necessary. I have yet to meet a PM who will give injections just for pain. Mine have never done that. As I said, diagnostic and therapeutic and then they take it from there. I do believe if you had injections every month for years and years, yes there would probably be a problem.

Billye right it was yorkiemom,or Cathie,Joan do you have fog brain or
it that me. And I agree with Kath. Hugs Sue

I agree with Mel she told us about Alan's foot surgery at BI but nothing about a pain clinic. Also all Dr.s tell people with PN they have depression and anxiety. The Zoloft he was doing well at 50mg. then they the drs. always
have to raise.it..Please be careful with that stuff. I would think a good neuro
would help. Or if you feel it's the spine try that..PN is so hard because you can get it from so many things...Hugs to you,ps are you sure you didn't
hear Mel talk about what luck they had with Alan's Ortho and somehow
thought she said pain Clin,and there are 2 Mels. Sue

Yes, sigh... It was me who has been on oral steroids, a little over 15 years. I have only recently been able to cut back on my dose this time-thanks to Flexeril. I was put on these when I did not respond to anything else.

I will warn you about the injections though. My friend here has had very limited oral steroid intake, but has the injections several times per year. Her adrenals are not functioning properly and her Endocrinologist has told her to limit the injections to twice a year, only if she cannot stand the pain.

She is really having a rough time painwise. Sometimes there is just nothing else that will give you relief in a rheumatic disease, other than steroids... In some rheumatic diseases, it is almost impossible to get off of these drugs. The rebound effect from even minimal cuts in dose, are NOT fun...

I fell hard over a small fence in my yard tonight, cut my mouth, crashed down on my left hip, cussed a lot and got mad at hubby for telling me I need to lose weight... The good news though is: I did NOT break anything, even after all of the Prednisone...

Cathie

Sounds like you did a number on yourself. Am I wrong...or did you fall over that same small fence last year? Seems like I remember a fall in the yard some time ago for you. I hope you won't have any lasting effects from the fall.

Billye

Thanks, Billye... This fall, calf high black fence (can't see it in dark); previous fall (face first in birds' trash bag) was on a step that had been raised... That one really hurt...

Maybe there is some benefit to having additional padding over the bones...
Cathie