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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Everyone,

I've been reading your posts trying to get an idea if my symptoms are similar to yours. I've had 4 foot surgeries in the last 3 years to build arches in my extremely flat feet that were causing me pain, only to deal with chronic pain over a year after my last surgery. Both of my feet are in pain 24/7, preventing me from beginning a teaching career or even working full-time. The part-time work I do from home is even too much on most days, when I feel like I can't get out of bed. I usually describe the pain in my foot to be crushing, as if someone took a hammer to the top right below my toes. My feet always feel freezing too and there's numbness directly on my toes, esp the pinky toes. Another way I describe the pain is as if my feet were frozen in a huge block of ice then someone took an ice pick or sledge hammer to crack it open. Sorry to be so vivid, my b/f cringes when I describe it this way. Anyway, in the past 3 months, I seem to be getting progressively worse. Also, sometimes I have pain on the bottoms of my feet, as if there was a golf ball imbedded in the middle of my foot. So many different kinds of pain I'm dealing with all at once. Cramping will spread to my calves and up my leg on some days, making it feel like restless leg syndrome. Also all the muscles in my body (neck, shoulders, calves) are stiff, sore, and achey and I also have tendonitis in my ankles, left knee, and right elbow. I'm also wondering if maybe I had fibro since I have a ton of those symptoms as well. Aren't I a mess! Kaiser is taking their sweet time with diagnosing me and getting me proper care. I've just been enrolled into a new pain management program that starts in 8 days. This pain management department is in the same department as addiction medicine (what a coincidence!) and, if they didn't make me feel like a drug addict enough each time I go in (because I'm 25 and just too young to be feeling any of this and should just take an Advil), for each visit, every other week, pain management patients have to take a urine drug test, a breathalyzer, and you have to hand all your meds over in a plastic baggy so the doc can count your pills. I guess it's necessary these days to tighten up and make sure people aren't just in there for the wrong reasons, but it sure makes you feel like you're doing something wrong! Sorry to digress, just had to rant. It's been a hard (and painful!) last few months. I'm taking Percocet to manage pain and it's just not helping enough. It works slightly for about an hour, then the next 5 hours are just torture. I'm also taking Celexa, an anti-depressant, and Temazepam for insomnia/anxiety. Other than that, I've been a hermit and practically bedridden.

Thanks for all of your info, advice, and recommendations!

Tanya
Hi Judie,

Thanks for responding to my post so quickly! It's too bad I can't see the website you referred to. I guess they don't allow the sharing of sites on here. I've been reading an exorbitant amount of information on health websites, etc., trying to gain knowledge so I can go into the doctor's office armed with at least some information. I've printed up a list of symptoms for both fibro and RSD and plan on showing my new pain specialist the lists. Very good advice about being an assertive patient -- I've learned that the hard way after being pushed around too many times by docs. I've always been a very passive and extremely sensitive person, so over the months I've been forced to grow a thicker skin and not put up with the BS you're so often fed. One doctor put me on Tramadol which didn't do much except give me tremors, and when I told her this she snarkily asked, "Then why are you taking it? Why are you taking something that's not helping you?" Um, because you prescribed it to me and I'm in a lot of pain!! If you're given a pill and told it'll help with pain, then you're going to take that pill hoping just maybe it'll help that particular time. I hate when doctors make you feel like a bad, dumb patient -- talk about adding insult to injury. I suspect that many of those doctors who lack sensitivity or compassion have never experienced chronic pain and also try to save face by making it seem like the patient is doing something wrong, not the doctor. I've changed my primary doctor twice, and my current one has a tough and stern exterior, but tries her best to provide exceptional and immediate care. It's been an emotional ride; I also want to be referred to psychiatry asap so I can have an outlet (other than this forum) for the pain and also the aggravation caused by the hoops you have to jump through with healthcare. Dealing with Kaiser has been a source of stress and anxiety -- not to mention the bills! Every time I see a new doctor and explain my case I get so emotional I end up with tears. This is mostly out of frustration and because I'm hypersensitive, but doctors often misinterpret it as depression and will ask about symptoms of depression, in one case even upping my dose of antidepressants. Anyway, I think the depression is under control and even the anxiety (which was much worse) has gone down with treatment and since I've been getting a bit more sleep. Now it's just about the agonizing pain that wakes me up every morning and pesters me the entire day. And also chronic fatigue. You all are such strong people for dealing with this much longer than I have. I'm getting a lot of support from family and friends, but it's still hard for them to understand. One of my closest friends is avoiding me right now because she doesn't know how to handle everything I'm dealing with...

With love and healing vibes,

Tanya
Hi Cheri, Thanks so much for the support and advice! Do your feet feel cold too? One doctor I went to said that it's prob not RSD since my skin wasn't discolored, swollen, or hot. I told her that it's the opposite for me -- my feet are constantly frozen and the toes are numb. I will definitely keep fighting! If Kaiser doesn't give me what I need or if I don't benefit from them, I might check out an alternative doctor who does acupuncture (tried it before thru Kaiser, didn't work but willing to try it again if seen more regularly), acupressure, and some other things. I'm half Chinese and grew up with a mom who is a big believer in Chinese medicine. I'll keep you informed with how things go! Today is one of my better days as I feel more energetic and positive overall. Hope you're also having a better day than most!

Lots of love,

Tanya
Hi --

There are times my feet feel warm to the touch but most of the time they are freezing. However, they are discolored and get swollen the minute I walk on them.

I am so glad you are having a better day. This has been a hard week for me due to other health problems.

I have never tried acupuncture but I have heard of some people getting results. I stay pretty mainstream on doctors, but depend on my faith to get me through the whole day. For me, prayer is the only way I can help the pain.

I do have good doctors that give me as much pain meds as they can. Texas has a chronic pain program and this may be why I have found help. However, I had seen one doctor who always made me feel guilty for something I hadn't ever done. I quit going to him.

Cheri




[QUOTE=ouchyfeetsies;4292040]Hi Cheri, Thanks so much for the support and advice! Do your feet feel cold too? One doctor I went to said that it's prob not RSD since my skin wasn't discolored, swollen, or hot. I told her that it's the opposite for me -- my feet are constantly frozen and the toes are numb. I will definitely keep fighting! If Kaiser doesn't give me what I need or if I don't benefit from them, I might check out an alternative doctor who does acupuncture (tried it before thru Kaiser, didn't work but willing to try it again if seen more regularly), acupressure, and some other things. I'm half Chinese and grew up with a mom who is a big believer in Chinese medicine. I'll keep you informed with how things go! Today is one of my better days as I feel more energetic and positive overall. Hope you're also having a better day than most!

Lots of love,

Tanya[/QUOTE]





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