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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Sounds like RSD to me. You broke your foot 6 yrs ago and it is still like that. RSD is pain out of proportion to the injury and getting worse instead of better...not healing. Burning, tingling, zapping, squeezing all RSD. It is best to get treatment in the 1st 6 months to have the best shot at remission, but you need to get this under control. When I was first diagnosed in 6 days from a slight sprain of the metatarsals, people could touch my foot. It was painful because my foot was killing me. I thought it was broken for sure, but it was RSD. I think u should trust them and get immediate treatment with blocks and meds like Lyrica, Neurontin....which kill nerve pain.
Hope this helps and hang in there. Most important for us NOT to feel pain and do Not ICE.
Welcome to this Board Jshu43,
Yes, it does sound like you have RSD -- It's important to get on some medication that can treat it -- Neurontin, Lyrica, Cymbalta, etc etc. Like it's said in a previous post, they all help treat the nerve pain. I've had RSD for a year and 1/2 -- It began in my left foot after a surgery that really wasn't done properly by a podiatrist. Now it's in both legs and both feet. I'm not sensitive to touch either, and I'm not blue or red. I had a 3-phase bone scan done at UCLA that showed hot RSD on my left foot and it was suspected before the scan. Anyways, I was given Neurontin in the beginning, then Lyrica and Cymbalta and now I'm on some pain pills and Trileptal (another anti-seizure pill). I pretty much see my doc every month. At my February appt, I'm going to discuss the Lidocaine infusion. Just my opinion, but I think the Lidocaine gives much better results and longer lasting results, and it seems like it might be safer. I'm less than thrilled with somebody messing with the area right next to my spine -- But it's just my opinion.
You will find lots of support here, lots of kindness here and lots of people who care about how we're feeling. Remember that RSD affects each of us differently so the treatments affect us differently too.
You take good care, :wave:
RSD can be in any part of your body, it's not limited to extremities. It can also be internal as well and effect any internal organs it wants to. Yes, even your ears can be affected as well.

The skin temp change and the color changes are because of rsd. This crappy disorder constricts our blood vessels to try to "protect" the part(s) as if it were still injured. So because of the lack of proper circulation it causes those changes that is very visible.

Neurontin doesn't do anything as far as spread goes. It's supposed to help the burning and pain. Other options for that class of meds are cymbalta which, according to a lot of other people really helps anything. Lyrica helps, as with most things, not for everyone. Both neurontin and lyrica cause weight gain. Topomax is another and does not cause weight gain but works the same way as the above.

Bone scans are a 50/50 proposition. It sounds to me as if you have the bone changes,ie osteoporosis, that would show up on the scan and "confirm" that you have rsd. Not everyone has bone changes or if they do it's not right away and could be years later. Like with me, I had 2 of them done in the first year and both were "normal". Luckily both docs that ordered them done on me knew that a normal scan didn't mean I didn't have rsd, just that I had no bone changes to show up on the scan. So, it's not something you HAVE to have done but since it wouldn't hurt anything then you could.

Blocks don't determine what "kind" or rsd you have, it only "reveals" whether your pain is SMP(Sypmpathetically Maintained Pain) or SIP(Sympathetically Independent Pain). You can tell which you have by your reaction to the block. If you get any pain relief at all then your pain is SMP. If you have no relief at all and/or it causes even more pain, then your pain is SIP.

Ok, I got every question! :D Yes, we're used to the rsd "newbies" asking a bazillion questions. LOLOL We happily and gladly answer them because it's the only way you're going to know the things happening to you are because of the rsd or not. I LOVE it when there are a lot of questions personally.

Hugs,

Karen





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