[LisaM]

My next appt with my pain doc is on Monday. Since November, I've been telling them my pain doesn't seem controlled well enough. My hands CRAMP really really bad...to the point where I can't even make a fist now. Heck, I can't even CLOSE THEM all the way at this point. Or, straighten them all the way. They hurt badly if I do. Even slightly bent, or held "normally" they throb and cramp. I can't take this anymore. Nightly, I'm in TEARS over this pain.

They've been blaming it on "the weather." Every time I tell them at my appts that I am not doing well, they say, "Oh, it's this darn weather!" and just write up my prescriptions the same. They have me taking magnesium for the cramping...and it's not working.

How can I get thru to them? HOW????? I'm TIRED of crying. I'm TIRED of them not listening. But the thing is, too, this time the weather was a bit warmer these past couple days, and it's STILL hurting. BUT...there was a new pharmacy that opened in the same building as the pain doc...they were handing out candy at the door, and asking patients to give them a chance, try them out. They were convenient...so I did. Only took 5 minutes, whereas my pharmacy, I'd have to drop the rx's off, and pick up the next day. BUT...when I looked, the percocet were YELLOW, and I always had WHITE ones before. The pharmacist said that it was the same thing, just a different manufacturer. Which, well, could be right....but what if the white ones worked better for me? So now that the weather got a tad better, it could be that the different brand of medication did this! So now th doc is going to blame it on that and make me wait again!

I don't know what to do! Any advice???????

[dreambeliever128]

My Methadone was round and had a line down the center and wasn't coated for years. A couple of months ago they gave me some that is long and coated and has a line down the middle. I called Steve and he said they had redone them so you might want to call another pharmacist and just asked but they do have different companies that make them and sometimes they just remake the pill.

Also as far as hand problems. My suggestion would be to see a hand specialist. I have one in the Springs that I go to. Actually I have one in Denver also but since he's so far away I switched to the Springs. He gave me some shots in my hand right next to my fingers about 5 months ago and I was just thinking this morning how good my hands are doing now. He doesn't want to do my surgery because of the RSD so he wanted to try the shots and they worked. Since you have TOS you may also have CTS, Ulner nerve or triggerfinger syndrome. You might want to be checked for all of that.

I do know what you mean about the hands. I was ready to let them cut mine off. We get to feeling desperate at times.

The weather here was 56 yesterday and will be until this weekend and we are suppose to get snow again. Not looking forward to that one. The weather does make a difference but I'm as miserable if it is too hot as if when it's too cold.

Have a great day, Lisa,

Ada

[LisaM]

Originally Posted by dreambeliever128

Also as far as hand problems. My suggestion would be to see a hand specialist. I have one in the Springs that I go to. ......Since you have TOS you may also have CTS, Ulner nerve or triggerfinger syndrome. You might want to be checked for all of that.

I do know what you mean about the hands. I was ready to let them cut mine off. We get to feeling desperate at times.

Thank you, Ada. Actaully the things I'm experiencing with my hands are from the RSD. My pt told me this would/could happen. It's why she gave me some of the certain exercises she did, and why you will see pics of some ppl with the rsd in the hands hae the "claw hand." What happens is the tendons in the center of the hand "shorten" and begin to pull the hand "into" the center of the hand, drawing everything in, until it becomes "concave" sort of. And I believe that is what's happening. It feels "tight" in there. The spasms are in the center of my hand, along the fatty part under the fingers, and also in my palms, and in the fat pad of the palm where the thumb is. It's related to the RSD. Sigh....and I tell my SO almost everynight when he asks what he can do to help, "You can cut off my arms! Right at the shoulder...right here! Please?"

And he wont do it

The pills, this pharmacist claimed that they are supposed to be the same as the white ones I get from my other, regular pharmacist....they are just made by a different distributor. But, I wonder if the "different distributor" has ones that just don't work as well. I wonder if there is a difference, or if other people have noticed a difference when switching pharmacies, and getting a different "brand"???? Would that make any sense, you think??? Would my doc use THIS as an excue now???

Thank you for responding hon.

[JOAN_M]

I Was Told I Have Reynauds Disease In My Hands. So That Could Be Your Pain. I Have Also Seen Where Reynauds Is Thought To Rsd. Ha! My Doctor Says ... What Difference Does It Make What They Call It, Neither Can Be Cured! I'm I With Him. I Try To Crochet And Do Other Things To Keep My Finger As Limber As Possible And Work Around The Cramping Up. I Also Use Heat On Them And Wear Only Leather Gloves To Contain The Warmth.

[dreambeliever128]

Lisa, I have heard some people say that the generic pills don't work as good as the name brand and also what you are saying about some not working as well as others I have heard that too.

Joan is right about the Reynolds. A lung specialist actually diagnosed me with that. I went to see about my breathing and when we got to talking about other problems I had he looked at my hands and said I had they Reynolds so that is a possibility.

Don't just chalk it up to the RSD, Lisa. I have exactly the same problems with my hands as you do and I was diagnosed with all of the above I told you. If you have insurance I think it would be to your benefit to see a Hand Specialist. I thought all of mine was from the RSD and I have seen 3 hand surgeons that said no it wasn't so your PT'er might be wrong. I'm not saying she's not good at what she does, I'm just saying she may be wrong on saying it's just the RSD.

Have a great day both of you.

Ada

[Jomar]

I added drug/pill identifier links and interaction checker links in the TOS forum stickys- so you might wan to make sure you got the right kind of med by checking with those.

I just added them to ours here.

[tayla4me]

Hi Lisa, I have the same spasm of my hands and feet and it IS horrible

I am now on Baclofan and Clonazepam which help heaps the dystonia heaps. I have whole body clonic spasms and have my baclofan through my intrathecal pump and it has been a godsend.
I also visit a hand therapist who ever so gently coaxes my hands out of the claw effect!
Wishing you luck

[HubbyWithRSD]

My hubby is on baclofen as well - We also (kids and I ) gently massage his hands when they cramp up and stretch them as well - Of course softly and if he needs to stop we do. Usually as long as he keeps them moving in some sort of fashion (nothing strenous) he does ok for the rest of the day. Do you have anyone who could help you out and do something like that?

[LisaM]

Originally Posted by tayla4me

Hi Lisa, I have the same spasm of my hands and feet and it IS horrible

I am now on Baclofan and Clonazepam which help heaps the dystonia heaps. I have whole body clonic spasms and have my baclofan through my intrathecal pump and it has been a godsend.
I also visit a hand therapist who ever so gently coaxes my hands out of the claw effect!
Wishing you luck

Tayla,
My pain doc doesn't want to give me any more "Pills" - and even though I'd rather not, either, I'd much rather take another pill than have these danged cramps! They hurt like heck! I can barely do my job, they keep me up at night, or WAKE me when I finally do get to sleep, and I break down in tears at home constantly cuz of them!

I see the pain doc again on Monday...I just have to get thru to them that this is something that absolutely MUST be taken care of!

Thank you so much for letting me know this isn't just a "me thing." Sometimes I wonder if I'm going nuts.

[LisaM]

Originally Posted by jo55

I added drug/pill identifier links and interaction checker links in the TOS forum stickys- so you might wan to make sure you got the right kind of med by checking with those.

I just added them to ours here.

Thank you, Jo. Both of those are in there...But yep...they are made by different compaines. So maybe that's my issue? Sigh....

thank you so much