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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - saw the doc (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/29495-doc.html)

Hi guys,

I just took a few days off from here just to think. I even made one day extra-special by treating myself to my favorite powdered coctail (with club soda chaser), and thought about what I expect in my future.

Jose, it would be nice if you're right about anemia. I've had consults (by phone) with two nutritionists and discussed my weight loss and severely diminished energy with my pharmacist several times, and no one brought up the idea of anemia. My doc is dickering with w/c about the pump, so I called and asked him if he could talk them into paying for lab-work. Doesn't look good, but if they won't, I'll have the clinic do it after I get my SSDI. If something could restore my energy, I'd be much happier.

I know, my friends, I should quit smoking. But I'm looking forward to suing the Marine Corps for making me start smoking (smokers smoked, non smokers cleaned up the area). I survived a childhood of juvenile delinquency without ever smoking tobacco, but after 3 days of boot camp I was a smoker. I could win.

The real reason I'm not going to stop is simple: I don't need the stress. I decided a long time ago that I might have to decide when to die, and my "quality of life" will be a major factor; I don't need anything that could add to my discomfort. If I go without smoking and come out with no desire to start again, I won't smoke. I'm just not interested in making heroic efforts to quit.

My weight has been a problem since the summer of '05, when I noticed I had dropped to 155 pounds; it became critical that Thanksgiving, after I had tried to eat more and learned I'd dropped to 139. It became an emergency a few months ago, when it dropped to 126. (I once weighed 220).

Trying to gain weight is a pain in the ***, and the stomach. If my stomach isn't painfully distended, I'm losing weight. I don't really understand it, I have tripled the number of calories but not gaining weight. My wife cooks meals she knows I enjoy: Fried everything; lots of potatos and gravies. Owell, 134 is better than 126.

And everybody in the family claims I got lost, but I didn't. I didn't know where I was, but I knew how to get where I was going, but the city kept making dead-end streeets.

I'm glad it happened. I learned that I have mellowed in my old-age, in the past I have been known to rage at myself for simply making a wrong turn. We got to see places we would never have seen, we laughed a lot, and after we finally got on the right hiway, the radio was saying that the 1st off-ramp was still a parking lot...Vic

Hi Vicc, nice to "see" you again.

We've had the discussion of ways to gain weight before, in the medical marijuana thread, so I won't rehash it... except to say that although I have tried all the methods, and manage to maintain my current weight of 92 lbs, my main outcome has been an elevation of my triglycerides.

I just wanted to let you know I totally understand not wanting to quit smoking. I started when I was 14, and have now smoked for 31 years. (I turned 45 on Oct. 1st, ack!)

Michael wants to quit, and he can go right ahead if he wishes. But I have no desire to. The rsd has already taken away my ability to do all the crafts I used to do to keep my hands busy. I cannot imagine how crazy I would go if I quit smoking too, lol.

I got lost in Kansas City when I was 18 and alone. I parked my car in front of a 7-11 to ask the cashier for directions back to the highway, and was shocked to discover I couldn't go inside the store! You had to use a drive-up teller sort of machine at a window. They may be common now in high-crime areas, but in 1979 it was unheard of.

The cashier was giving me directions and telling me to go NOW when she looked over my shoulder and gasped. When I turned around, there were 5-6 young men actually sitting ON my car, just smiling... and smiling in a way that made me gulp.

I couldn't see that I had any choice. I walked to my car with my head held high, and unlocked the door. They let me get in, astonished that I had the nerve.

I locked the door, started the car up, and slowly began to back up. They remained on the hood and roof of my car till I exited the parking lot, then slid off.

I have never been more scared, not even when my r.v. was getting searched by the border patrol as I left Mexico! ;)

I sure hope everyones suggestions help, and the implant too. I'd love to hear that just ONE of us was feeling & doing better, and I can't think of a more deserving person than you.

Vic,
I am just astounded that neither your doc nor your nutritionist has even explored the possibility of your being anemic. There are many things that can cause or worsen anemia. Maybe one of the reasons that this hasn’t even been considered in your case is because you a male, and you have no noticeable blood loss. I know that sounds archaic, but as I said in my last post on the subject, I had such problems getting our docs to listen to me about Jay. The main reason that I could get from any of the health care workers that I took him to was “he is male”, and as I said he didn’t have anyplace that was visibly losing blood. Or that THEY could see, or would pay attention to me about. The only reason that they DID look into the problem was because of the nose bleeds that he started having (not in any way related to or caused by the anemia. They only helped to make it worse for him, though). But, HE WAS ALREADY ANEMIC BEFORE they started happening. So, I guess it was one of those “blessings in disguise” that the nose bleeds started, because THEN it gave the health care workers a reason to check into the anemia problem. Of course, they attributed it to the nose bleeds......but at that point I didn’t care. As long as someone was listening to me, and able to give me the help I needed in figuring out the right amount of iron to give my 2 year old son.

I think that trying to introduce more iron into your diet, and doing the things to help allow your body to absorb it (like not drinking the caffeine before, during and after meals), would be good things for you to try and see if you can strat to get things turned around. I don’t know for sure that you ARE anemic, or that anemia is what is the cause of all of your weight loss issues, but I wouldn’t be at all surprised to find that because of your not being able to eat, and then trying to eat the high caloric, fatty, and fried foods in order to try to put some kind of weight back on, that you ARE anemic now. It just stands to reason....at least to me. (LOL..I am not at all sure that I got that last bit out right, so I hope that you can understand what I was trying to say there. LOLOL. Looks like it is going to be one of those days for me again!)

I guess if you were female, you would have already had your iron levels tested, as that has been something that I have found that health care workers try to use as an explaination for fatigue and a host of other problems in women. I understand that just the differences in the male and female bodies make us women more prone to being anemic.....especially for women of a certian age. But, then, you have women like my Mom who are STILL anemic, even after having gone through menopause.

As I said, I wouldn’t even try to presume to tell you to go and get some iron pills to supplement your iron intake, as iron is NOT anything to mess around with. Not enough iron in your system is bad, but too much can be fatal. It is not something like vitamin c, that you can just go and take butt loads of and call it good and not worry. Not in ANY way. But, I don’t think that taking a daily vitamin that has some iron added in would be a bad idea. I think that it might help....at least a little.

Anemia causes fatigue...big time. You also don’t have to be underweight to be anemic. I can testify to that. In my opinion, it wouldn’t hurt ANYONE that has to take so many different medications daily to go and have their iron levels tested. There are so many things that can lower the iron levels (and other levels of things) in our blood...and Lord knows that just about everyone here takes multiple different kinds of medications that produce all kinds of different side effects. And, so may medications alter things, and interfere with things and with each other, that it is very hard to keep up with it all, all of the time. I mean, even things like Neurontin get interfered with, or interfere with others. I haven’t heard anyone talk about how you aren’t supposed to take things like Milk of Magnesia during a certain time period around Neurontin doses. I forget which interferes with the other, but if I remember correctly, it is the milk of magnesia (and other things of the same ilk) that interfere with Neurontin’s working like it should.

Anyway, I hope that you are able to get your blood levels tested. I also hope that in the meantime, you will try some of the suggestions that I have written here, and see if you see any kind of improvement at all. Even just a lessening in the fatigue would be a great improvement, wouldn’t you say? As I said, I AM NOT saying go out and buy a bottle of iron pills and start scooping them down...THAT IS DANGEROUS! But, a vitamin with a little bit extra iron in it wouldn’t hurt things (unless you know for sure that you are one of the rare people that has TOO MUCH Iron.....but, that is very, very rare). You might talk all of this over with your pharmacist to get his/her idea and input on the subject, while you are waiting to see if you can get those labs done. Pharmacists are SOO Helpful!

Anyway..I hope that you break was a good one. Glad that you are posting again.

Love and :hug:
Jose

I definetly agree with Jose, I would be checked for anemia.

I will say also, I deal with the CFS so it might be a thing of it's own. I don't remember if you were diagnosed with it but it could be that you have it also.

It sounds like it was a good thing that you got lost. You most likely got to where you wanted to go quicker then others.

I do hope you start feeling better soon. I know how rough you have had it for so long. You deserve some better days.

Ada

the pump & anemia

I too am anemic. It didn't stop the surgery for
my pump. There is so much to consider before you get a pump. I've emailed Debby about all this, it's too much to put here. If you PM me your email addy, I'll give you the details via email. I just may have your email anyway.

Did you know it takes 6 mos to a year to get the pump dose correct and sometimes weekly doctor visits? They can't give you a high dose to start because you "could" stop breathing. Maybe morphine won't do it, I had to switch to Dilaudid after 2 months, due to morphine tolerance. Maybe you'll need to graduate to Fetanyl, but if you have an Excellent Doctor like mine, the time to pain relief goes faster. There is a forum to join and read & / or post questions, before ANYONE should get a pump. You can get 50-99% pain relief. And on that forum I spoke of, there are Many RSD folks who get a tremendous amount of relief,
and back patients with leg pain do great. So I don't know where you got
your stats that it doesn't work well for rsd. You can't tell that by the number of successes on the forum, and you'll find out there the questions to ask your doc pre-pump surgery and also how to make this surgery a Success.
I'd never want to have mine taken from me. I should have had mine years ago. Darn work comp. Why take meds that don't even work when this is
what I needed and should have had all along. I think Colleen has one (with Dilaudid) also. I'm not pushing the pump for everyone, maybe those who take meds and don't get the pain relief needed.
I'll get off my podium now. :)
Hope

Vic,
Regarding the smoking....which by the way, I'm still doing it too!! Have you asked your doc for [I]Chantix[I]??? We've been selling alot of it as a stop smoking tool and it really seems to be working well, although one side-effect, pleasant to many, is extremely vivid dreams!! Sleep well my friend!!
Diane

I hope that you get the medication you need.
Regarding the smoking:
I have heard that nicotine helps a lot, just give it a go and see how you can on. However I must warn you that some people get addicted to it.
My grandad used to smoke and after suffering from an heart attack he suddenly stopped smoking and he's not touched a cigarette for years now.
It take's a lot of effort to give in smoking and it will take a long time, so please be patient!
Hope this helps
Pain free hugs
Alison

P.S: Think about the damage that smoking is doing to you, I am sure that this will help to stop.

Ya know after a certain age if smoking was gonna kill ya it would have. But my guess is there are probably far worse things to worry about than that. :winky:

Hi there again. Following up on Jose's comment, I was found to be moderately anemic, until my hematologist - whom I see for an unrelated issue - put me on Vit. B-12 (1,000 mcg./day) and then my level of hemoglobin suddenly shot up into the normal range. I also started putting on a little weight again, which in my case was a disappointment, but to each his own. Interestingly, the hematologist thought that all of the drugs that I'm on could have triggered the anemia in the first place.

So, yes. By all means get checked out for anemia.

Mike

[QUOTE=HopeLivesHere;157516][COLOR="Purple"][SIZE="3"]

Hi there,
I noticed you said :-

Did you know it takes 6 mos to a year to get the pump dose correct and sometimes weekly doctor visits? They can't give you a high dose to start because you "could" stop breathing.

I must have been extremely lucky with mine as I took just 4 weeks to have my dose titrated to a level that afforded me the maximum amount of pain relief I could achieve.:)
I was already very tolerant to many opiates so the fact that the dose was considerably less than I was having IM meant I had no problems with respiratory depression.

I wouldn't be without mine even though I feel as though it is not working at all sometimes but the truth is that I am not sure just how bad it could be without it.:confused:
It isn't for everyone for sure but the pump trials beforehand should establish that so that no surgery is undertaken unless there is proof it will be worthwhile.
Take care Tayla:hug: