Terrified
 

Well, Fall is just about here so the weather is changing and so is my pain. This summer I was starting to do pretty good. Most of the time I almost felt like a person, but now...CRAP! My CRPS has spread from my left ankle to both legs and lower back and I am terrified of the cold weather that is coming. I don't know if I am going to get through it. The last few days have been hell and it hasn't even been that cold yet. We have had back-to-back storms though. Yesterday I could barely walk, and I have been getting more frequent flares that are intense! I soooo don't want to do this. I remember last year. It was the worst time of my life going through that much pain and it was only in my ankle. I can't imagine that pain in both legs! I am freaking out! I am really trying hard to stay calm, but it is really hard. I know stressing is just going to make it worse, but I can't help it. I don't know what to do. I just can't do this!


My doctor (the only one who hasn't given up on me) wants to send me to Seattle. He is hoping we can find someone there to help me. I am not sure what to expect. I am going to find out about as many treatments as I can to bring up to them though. The only thing that I was able to try was SCS and some meds... Lyrica and Cymbalta and Oxycodone/Hydrocodone. There must be other things out there that I can try to help me with my pain. Right? Surly when those doctors told me there is no hope it was not true. I am really hoping they are just ##*^^&*!!! LOL

try this http://www.openfocustraining.co.uk/exercise.html
and this http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf

I am feeling just the same at the moment Angelina, terrified of the coming cold months. This last few days have been like a plunge back into the darkness - I'm losing so much of the mobility and movement I gained during the last two months, and my pain is skyrocketing. It's scary isn't it? (Understatement of the year...)

Hang on in there girl and I hope your doc can do something to help. I've yet to find a med that really helps, I hate asking now because I just get disappointed. I'm still trying to tough my way through.

It's not even cold yet for goodness sake! Just coldER. In the next month or two the temperature will drop another 10-20 degrees C, we'll have increasing rain and wind, storms, ice, fog.... It costs a fortune to keep the house warm enough for me to function, and we just can't afford it, and I just don't have clothes that keep me warm when I go out - and cant afford to buy what I need. My elder daughter recently bought me (as an early xmas present lol bless her) a cosy jumper in a lovely soft chenille type material that actually doesn't aggravate my skin, and I'd kill for trousers and socks in the same stuff!

Good luck with your doc and hope he can help you this time :)

Bram.

Hi Angelina,

I'm so with you on this.. as you may recall I am just on the opposite pass from where you are and our temps have been dropping fast. Saddened to know that in another month the snow will be flying.. oh I hope to have a better handle on the pain by then.

Something you may be interested in asking your doctor about is a Butrans patch. I've only had the SCS for 8 weeks now and although it does help there are times when pain is still hitting 8-9 and so I have conceded to using additional meds. I was previously only using oxy or hydro when pain got out of control but, as my doctor explained for long term pain this is not the best way to treat it. So they had me try a Butrans patch at a low dose and then still have the backup of oxycodone for BT pain if needed. The patch has really helped keep things at a more tolerable level and the spikes aren't nearly as frequent. The only down side has been some nausea/vomiting (which all the other meds give me) and slightly less alert feeling but not so bad that I can't keep my eyes open. I just started my 8th day of the patch so I am hoping the nausea subsides by the end of this week as my body becomes more used to the new med. All in all I am happier with this medication compared to the others.

I also continue to use the lidoderm patches, epsom salt soaks, compounded cream, flexeril, celebrex, gabapentin and voltaren gel along with the SCS 24/7. Together they all help some. Certainly better than going without!!

A pain management doctor I highly recommend can be found at Pain Consultants of Washington in Kirkland/Bellevue. He is kind, patient and extremely knowledgeable in treating RSD/CRPS. He actually told me that the only two conditions he treats with the same aggressiveness is Cancer and CRPS/RSD. He also explained that you have to treat it like you are in a war.. hit the ground with both boots, running! He understand the need to treat quickly and aggressively and does that together with a team of professionals based on the patients unique symptoms etc., Can't say enough positive things about Dr. N.

When I asked him about how to prepare myself to cope with the winter.. he said "keep the limb warm" that is the best thing you can do is really try to keep it warm and also keep it moving as hard as that seems. So I've been shopping for technical clothing that I can tolerate and that will add the additional warmth. Athleta, REI and Patagonia have many options... waiting for a $ale :)

Hang in there,
Tessa

I know it is crazy.. my sensitivity is getting worse, pain, all my symptoms are coming back with a fierceness! And it is still fairly warm. I am so not ready for fall let alone winter. I am thinking of moving out on my own. I have been contacted by Idaho Housing about help for renting payments so I can get my own place but I am scared of living by myself with my daughter. I don't know if I will be able to do it. Finding the right clothing is very hard. It is great that your daughter got you that jumper. I wish you all the luck in the coming cold months.

Enraged
 

My insurance turned over on 9/1. I went to pick up my prescriptions. Imagine my surprise to learn that my CR oxy was 300 dollars. Not only that, but the FDA has blocked generic equivalents due to addictive potential. Therefore, those of us in legitimate pain are, once again, unfairly "labeled" because we must take narcotics to keep our pain under control. I'm going to call my pain dr. On Monday and see if there is a cheaper CR or ER med that works as well. This is just extremely frustrating. I looked into discount programs, but they don't. Discount narcotics. Surprise. It didn't help my former work put me on the wrong insurance and didn't tell me. They put me on a policy with a 3K deductible. Ugh. I am just beside myself. I can see why people give up with this disease. I fell Thursday and have a concussion, sprained neck, two torn ligaments in my wrist, separated shoulder, fractured right ankle, 3rd degree sprained left ankle and hip contusions. The ER doctor said he ad never seen anyone in two boots before lol. I don't know whether to scream, laugh, or cry. There's nothing fair about this at all.

TK
:(

That's completely wrong TK, I wish you could get some decent care instead of this sham system that just makes things worse. I completely admire your ability to stay sane through it all!!

Hang in there and I'll have my fingers crossed for you.

Bram.

Oh, Angelina I wish I could send you some good warmth. I wish I could give helpful advice other than what I'm sure you already know. I know there are cheap warming inserts for pockets and shoes, but they only last a couple of hours. Maybe stupid, but my Dr. has me take Vit. C and magnesium citrate to help prevent spreading. Wishing you relief.

T.K. I hate the system that's giving you such a "run around". I'm really sorry to hear about your fall and more injuries (just what you need). Did the E.R. provide some pain meds. for you?
Since you're in TX are there any options if you go over into Mexico?
Wishing you some relief!

Angelina
 

For foot warmth I use fleece socks. They are pricy to invest in but last years. Look into Sierra Trading Post on line. They sell a set of 3 pr of men's fleece socks for 1/4 of what some of the prettier designs sold for women. Generally a male shoe size is two sizes smaller than women's sizing. So for my 11 sized foot, I order a 9 in men's. these things are so great, my husband wears them for foot warmth and he doesn't have RSD to contend with.

Other than that, I feel your pain. I got RSD when I lived in Michigan, it took my husband 2 years of looking and fighting to get a transfer to a warmer climate. Just opening and losing the door to put the dog out caused me immense pain that was hard to get past. We had a heating pad that was long, like about 1' x 2'. It was long enough to wrap around my arm and then I would just sit, plugged in to the wall. The furnace never got it wam enough. Layers. But you already know that. Warm thoughts, Sylvia