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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE]I now understand some of your frustration and anger when going from Dr to Dr.. Is there a difference between RSD and CRPS?[/quote]

It's 2 names for the same thing. We mostly just refer to it as RSD, but technically it's now the "old" name. It was changed to CRPS about 3, maybe 4 years ago now. I do remember it happened after I had been diagnosed in 2003. They changed it due to the change in thinking and CRPS explains much better what this disorder is. Atrophy or dystrophy isn't something that is an absolute with this thing.There is type I and type II. All that means is type I being CRPS with no nerve damage, type II is there is some level of nerve damage.

[quote]How accurate in diagnosing is a bone scan in the early stages. With all the symptoms I have I figured being in the first month or so, it's mostly on looks and touch. With my foot being twice it's normal size blue and purple then red, cold to the touch and pain like acid being poured over my skin then when touched feels like salt being poured on my weeping flesh.. *sorry for the gross picture* The memory issues, the sores on my foot, you would figure that would be the first thing, but I guess the dr wants more money from my insurance or maybe the bone scan rules other things out, even though my family dr says RSD and Pain clinic says CRPS and is very worried about my foot and ankle and can see where it's spreading up my leg. When I first got there, the nurses and my "PAC"- the lady I see at the Pain Clinic is like you realize how serious this disease you have is lol then my Pain Dr comes up and thinks maybe i have shingles until he see's my foot and feels the temp difference. He's like I want a Bone Scan NOW I mean asap.. He touched my foot I was such pain I just cried it took me about 5 mins to settle down by time I did I was sweating.. I must say I wanted to kick him. So I had a bone scan tomorrow morning then right after I have another appt with the Pain Clinic, then they are sending me for another kinda PT This PT lady only works with CRPS/RSD I think i'm going nuts lol.. I hope everyone else had a better day :([/QUOTE]

A bone scan is not accurate at all at any point with RSD. There are some with RSD that get a bone scan in the first 3 months and it shows positive changes signaling rsd. Then there are lots like me who get at least one and it shows nothing at all. What a bone scan shows is the bone changes rsd has wrought. Like osteopenia or osteoporosis. I had 2 bone scans in the first year and a half and neither one showed rsd even though it went full body in 11 months. Some guy I knew back then, online, had had rsd for 10 years already and his bone scans were still normal and he was full body also. It's a 50/50 thing, personally I would say more like 20 it'll show and 80 it won't. LOL Just because it doesn't show rsd does not mean you don't have it.

It's nice to have an official dx. I see so many of you that are in limbo no knowing, yet knowing.

As to your earlier post........[quote]Maybe since I'm just noticing things and being paranoid about my leg and foot now, I know RSD can make your nails grow and hair, but what about the hair on your head.. I dye my hair and I get it touched up ever 3 months and I just got it done less then 2 months ago and I've noticed that my hair has already grown out a lot! Is that normal or me just noticing strange things, I may not have before..[/quote]

Nope not paranoia at all..they ARE out to get you!!! ROFL!!!! Ok, yeah it can affect all the hair on your body even your head. I started having lots of my hair fall out right after the rsd started. I'm not bad yet so it's all good! LOL My hair has followed the rest of me though and grows very slowly which is just fine with me. Saves money on getting it cut. I keep it very short. One reason is because I was used to having it that way. I was a cook when I got hurt that led to rsd. Two....it's much easier to see very short hairs come out than long hair. :-)

[quote]And what about sight? I was watching tv the last night and it's like my prescription on my eye glasses are getting weak. I took them off cleaned them thinking they could be dirty, put them on and nope things are getting blurry.[/quote]

It can affect eyesight as well. It doesn't mean rsd is in your eyes or anything. It affect our nervous system and everything is connected to it. My eyesight has changed since I've gotten rsd. At first it improved my vision a bit, now both eyes have the same number 4.00 and I have astigmatism in one eye too.

[quote]Do your sores burn Karen? Is there anything I can put on these white lines that are on my foot from it being so swollen? I tried Lotion and it just burned, not sure if it was from the lotion for having to touch my foot. Can I put a brace on my ankle so It doesn't move as much when I walk it's like my ankle is weak but it's very hard to move. Lord knows I'm doing everything in my power to do normal things. Errr, just getting so frustrated.. I also looked up info on my pain clinic, since I've been reading a lot about these SCS and found out my pain clinic dr does them. So if this is what we all think it could be, at least I'll have a Dr I trust. Thanks for listening to my paranoia rants lol[/quote]

Sometime they do but it's usually because my leg around it burns. I know others who say their sores itch and burn. It might be just from touching your foot that caused the burning sensation. I use Jergen's ultra healing lotion. My skin has gotten dry really, really bad and this is the only lotion that seems to help it a little bit. My sores don't burn from it nor does my skin. I keep I think it's gold bond...the green bottle lotion handy for when I get really itchy. Man, that stuff stops the itchies in seconds! Love it for that!

You can use a brace, one of the flex ones from the store, you mean those right? It can give you the support and more secure feeling. Along with exercising and stuff it should be fine. I've had one one of those wrist braces, the hard ones with that metal piece down the center, on every now and again and it hasn't bothered me. As long as I didn't wear it for too, too long seeing as how it keeps the wrist from moving at all. LOL

Rant away!! It's what we're here for. *hugs* I'd rather you ask questions, try to figure out what the rsd might be causing or not rather than have you keep wondering and never get an answer.

Hugs,

Karen
[QUOTE=Reiannasmommy26;3671426] I asked her what the cup was for. She's like oh we do random drug testing and you got picked.. I'm like okay, I don't take anything but what they give me .[/QUOTE]

Hi Reiannasmommy :)

I believe some, if not all, states now require random drug screens for patients of Dr's who prescribe narcotics on a regular bais. I was told it's been implemented for the following reasons:
1) to see if you're metabolizing your meds at the correct rate
2) to be sure you're actually taking them and not selling them on the street or giving them to someone else
3) to check for "street drugs" and/or any other substance that might interfere with prescribed meds

I had to do the pee in the cup thing, too. Whatever the reason(s), I can understand it because there's been so much talk of restricting Drs from prescribing narcotics in the amounts and dosage required by patients with chronic pain, cancer, etc.

I was dx'd within days of onset (without a positive bone scan and none to this day). I believe the early treatments kept me from progressing too quickly. It's only lately (after 2 1/2 yrs.) that I'm seeing changes for the worse in symptoms and pain. I've had psoriasis for most of my life and I never had open sores until just recently...they break open, weep, heal-over, break open again - a vicious cycle and very, very painful!! I was told it's due to the RSD and nothing really helps except the epidurals for my back...it seems to clear up for a while following the epi. Topical treatments all burn too much! I'd love to know if you find anything that helps you with the sores.

I pray that you find a Dr who will treat you like a patient with CRPS/RSD and not a psychotic hypochondriac, as one of my more charming Ortho's once labeled me. I wanted to rip his head off! There are some real winners out there but I have a great PM Dr. I hope you'll find one, too :)

Best of luck!
Vicki





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