[krazidame7]

I posted the other day about the numerous side effects I was experiencing and thought it was related to phen. I stopped taking it the other day because it had me freaked out. Today I noticed this FREAK change in my hands where they flared up much worse then before...in my other post i said my hands would turn red and the veins bulge, and the only relief is coldness, and that it started happening the last time I took phen a year ago but never stopped despite stopping for almost a year. My hands were really bothering me so I figured I would call my doc and ask to come in since he never saw it in action, he only had to take my word for it before and was clueless.

He said he never saw anything like it. He had every other doc in the office looking at me, none of them had a freakin g clue. then he noticed my one hand turning white and getting cold while the other was still hot and bulging, and they looked something up and came up with a diagnosis...raynaulds phenomenon, then they found the opposite right under it called erythromelalgia or Mitchells disease, and thats my hands flaring up. They rarely occur together but sometimes do. I asked what caused it, they didn't know. They started looking it up and I told them every kind of med I took in the past few years, basically ephedra for 5 months til it was taken off the market, and phentermine for 2 months last year (when the flares started) and phen up until a few days ago for 2 weeks.

They didn't find that either are the cause, but rather, found that one is a remedy...ephedra because it constrict peripheral blood vessels. Then I thought, wait a minute, so does phen...and I said, could the remedy be the cause since I didn't have it when I started? Their answer was, possibly. I could have made my body dependent on something else to constrict those blood vessels, such as phen, so I think I fould my answer to atleast part of it...I wonder if its possible for all stimulants to do that, apparently nicotine can do it so, why not caffiene too? I just stopped taking caffiene pills when I started the phen, didn't stop drinking soda. So my theory, since apparently there isn't a damn cure and there aren't any real definitive causes of it, is that maybe its my bodys reaction to stimulants in general and maybe its mirroring the disease (I have heard of people on phen and other things having effects of diseases that went away later after stopping) I was basically just diagnosed with 2 rare diseases that are not understood and do not have cures. Maybe since a stimulant seems to be the cause of my symptoms and I was never stimulant free (caffiene lol) I might just be allergic to stimulants I noticed that not only does my neck have a tight feeling when i use phen, but it would do that when i took vivarin too just not as bad. There is definitely a connection here I think and it sucks!

[krazidame7]

okay I think I figured it out after some research...since, stimulants in general are vasoconstrictors (thats what causes the raise in BP, vasoconstricting) then when they wear off, dialation occurs. For me, it appears to happen FAST, the only time that it actually didn't happen was when I was on a time released version of phen, when I switched to the other, boom. Same with caffiene I bet. So now I just have to figure out how to cut it all out without making things worse, if they do get worse I will be screwed. If they disappear, then maybe the stinking list of causes for erythromelalgia and raynaulds should include all stimulants? does this make sense lol

[rebeleagle1965]

Well, I'm happy for you that you got some validation and atleast an IDEA about what was going on. I read your other posts, but I didn't respond because I had NO clue as to what to say, lol!
If I were you at this point, I wouldn't leave it up to my primary physician. If they had to scratch their heads over a textbook to give you this much info, where can they possibly take it from here? Ask for a referral to whatever type of specialist should handle this. Even if they do say it's incurable, there could be management therapy (or it could be a misdiagnosis!). My guess is it would be a neurologist. But it sounds to me like this is really worrying you, driving you nuts not knowing what is wrong, so please go and see someone who would be able to determine, without a doubt, what this is......not only to try to get rid of these symtoms, but also to have a whole lot less stress wondering and worrying! Best of luck, and get well!

[krazidame7]

Thanks and your right lol its driving me crazy! And I have to find a way to get to a neurologist, thats what I would need to see only I don't have insurance I have been doing lots of research since the doctors didn't know much (not a surprise lol) and apparently what happens to me is the opposite of what happens to others on phen...alot of people experience coldness in the extremities, or raynaulds phenomenon. Erythromelalgia is the opposite of it. Since many people are treated for the other with B12 shots or b vitamins I am wondering if thats where my problem lies, in a defficiency. I don't see any harm in taking a b complex vitamin in the mean time, maybe it will reverse things. Since no one else has had the same problem with phen I can only think that phen kind of woke it up, like it was bound to happen eventually anyway, so I don't think phen is the primary cause of it atleast I don't want to scare anyone lol

[rebeleagle1965]

That's horrible to be going through this without insurance....If you decide to try the B-12 though, I wanted to let you know....
this particular vitamin isn't very efficiently absorbed as a pill. It is most effective in the shot form, but since that isn't readily available over the counter, the next best thing is to take it sublingually. You can get little lozenges or strips that dissolve on the tongue fairly cheap at any walmart or drugstore. Another thing you should know is that it's one of the few things that you can't take too much of. Ask your doctor or do a little research to see what a good dose would be, of course, but if you take more than what your body will use, any excess will just be excreted in the urine.
Stanger things have happened-it may not be the phen, but I know every time I get a script and read the fact sheet, I see the "rare but serious side effects" part. THere's usually some pretty serious stuff listed, and I always wonder if those things really happen-how common it is. And EVERY one of them states "some side effects may occur that are not listed here", which basically means to me that it is not predictable in EVERY case, no medicine is-and they're just covering their butts, ya know? I don't think it's scary as far as for others to be concerned-you may be one out of millions that this happens to, or it may be unrelated. Because there's no precedent you may never know for sure. Well please keep us updated and let everyone know when you can get some more answers, and how you are doing.
Laura

[krazidame7]

lol it would be nice to know for sure! I think the fact sheets are basically covering their butts too...I called the manufacturer because I was just completely baffled and couldn't think of anyone else to call that would know better of strange side effects lol and ofcourse they were just as surprised to hear it as everyone else, so it must be some kind of strange thing. Hopefully i will be able to go to another doctor soon, I found a yahoo group of people who have the same thing i do, and none of them took phen before lol but just to show how rare the thing I have is, there are only 500 people in the group. Its nice to see others with it though who are basically ahead of the doctors on everything LOL

I am glad you mentioned the shots because I really was about to spend mega bucks on vitamins lol I was thinking of just getting b complex

[susanpesek]

Wow! You guys are so intelligent. I just want to say thank you to those who research their information and then go to the trouble to post it here. BRAVO!
In every county there is a mental health center which is affiliated with the County Board of Health where you can receive advice and care for any problems you are having~physical, emotional, psychological....and don't be ashamed to phone them. It doesn't mean you are crazy; it just means that is an option to help them direct you to the right place!
My own kids have done this and the care received is on par with their regular GP's. The reactions you are having should be explained to a nurse after you phone them, and you must be persistent in calling and asking until you reach the right area of the system to gather the help you need, for whatever amount you can pay.
Please phone them and ask for some help. Best to you!