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CRPS

Dec 10, 2015 8:28 PM

Hi there I'm new around here. I have CRPS and today as o try to sleep I can only think how I used to walk, wonder and just be free. It makes so sad.

Dec 10, 2015 8:36 PM

Hello Paula! Feel free to join in on conversations or ask questions. We are here to help and support each other even though we are all in pain! I have CRPS also!

Dec 11, 2015 12:50 AM

I have crps I to have it in my right leg and foot haven't walked really for about a year and half now and foot is still in my walking boot.

Dec 11, 2015 1:19 AM

My movements have improved but still I can't walk long. And I don't feel safe at all walking without crutches. Where are you from? Thanks for replying my post :)

Dec 11, 2015 1:24 AM

Iam from saskatoon saskatchewan. Ya I still walk only with crutches or in a wheel chair or my leg scooter. Are you working or not. And yes the pain is never easy to keep going through on a daily bases either

Dec 11, 2015 1:29 AM

I've been trying to work since the accident but I just can't. This week I started full time leave again and I'm preparing to request the request for disability. I was working 25% but I can't perform, which is really frustrating because I was excellent at my work. And going to work I am unable to have any kind of life whatsoever. So I'm coming to terms that this won't just heal and go way. It's hard to admit that life won't ever be the same. Specially that will be so hard.

Dec 11, 2015 1:33 AM

Ya I've been of for 4 months and am waiting to find out if I'll have a job or not at the desk job witch not looking forward to from being a forklift driver to this maybe at a few hrs a week my injury happened at work

Dec 11, 2015 1:37 AM

From my experience I must say. Working has not improved my condition at all if something has worsened. Be careful and don't over do it.

Dec 11, 2015 1:40 AM

Oh Iam learning day by day

Dec 11, 2015 11:49 AM

Next week I go for a Emg on the nerves and muclse to see how weak my leg and foot got. Have you gone for any testing and how many Meds are you taken if you don't mind me asking.

Dec 11, 2015 11:57 AM

I'm not going to lie to you, I had an EMG test done back in 2014 on my right leg nerves and it hurt like hell! I was crying and screaming for him to stop holding my moms hand. And then I had a nerves decompression surgery on it and when he opened my leg up he found the test in was wrong, my nerves were in a much worse condition than the test showed and ha neuropathy too. It really depends on the person doing it honestly! Make sure the person operating the test on you knows what they are doing! It's your body and you have a right to know how experienced they are. I have also had a myelogram and a ct scan of my back and spinal area which did not hurt as bad. I can't have an MRI because of my spinal cord stimulator now but I had a some of them of my brain, and legs before the SCS. I hope the best for you! Testing gets the doctors minds thinking on a higher level of what's going on so it's important to go through the process of them.

Dec 11, 2015 12:02 PM

The dr was upset I didn't get last time and really wants to do it so everyone said to do it and get it over with ya being Iam a little worried for it but hope it dosent cause any more damage .thank you I'll let ya know next what happens

Dec 11, 2015 12:09 PM

It's important to communicate all that with your doctor. You shouldn't be worried about doing something, like a test that can help you get answers, that's going to make it worse. Only because there doesn't need to be a reason for it to get worse with CRPS. I know that's not super comforting but your body is going to do whatever it wants, any minute you could be in remission from it for no reason and any minute it can jump to another part o your body for no reason. You have to accept this with this condition, I know it's not easy, but I'm here to talk and so are a lot of other people here in pain and scared. I whole heartedly hope you get the right help you need! Yes please keep us posted!

Dec 11, 2015 1:38 PM

I have Crps and still have breakdown moments. This month financial and holiday stress are really difficult. I had Emg conductive nerve study. It was pinching for me not terrible and quick but Yes you must have good neurologist. CRPS doesn't show on EMG it will help you rule other things out. Guys there is a brand new book called positive options for CRPS. It is so good!! By Elayna juris and a few doctors. Best!!! I am not okay living in bed as much as I do and am determined to stop but this disease knocks you down so easily. I was at neurologist yesterday and weather front came in - while medicated and waited 1 hr pain hit 8 I was uncontrollable crying trying to stay on point and he was empathetic saying go to Pain mgt now! Get something more. I feel like a baby so fragile that I am unsure when to get more. Enough!!!!! Anyway I miss my old life to but we are forging new me(Us

Dec 12, 2015 1:30 AM

Hi I'm so happy to have you guys participate in this discussion :) first of all I fell absolutely the same. I feel like the old me died and I have to be reborn, just a way of copying with the fact that I feel in my core life won't be the same again. Well I also have Steven Johnson syndrome so no NSAIDs for me. So I take paracetamol and lyrica, most recently Citalopram that helped with my general pain and helped a bit to have some appetite m(I lost 11kgs in 10 months). I also have severe migraines and for that I take Zomig Oro. I try to keep the meds to a minimum. I try to eat fresh organic food, but I don't have pleasure of eating anymore. I also did a Orthomolecular treatment(expensive as hell, just the most top insurances in Europe cover) but it did help to rebuild my tendons. I ripped two tendon as I sprained my ankle in my accident. I was early diagnosed I do physiotherapy 3x a week and also counseling 1x a week. Now I stopped working and I'll not come back until I'm stable, sometimes I try so hard and the frustration of the result never being the expected is so stressful and then the pain increased and stress increases and pain increases ahhh! Then it's time to meditate, take a bath wrap my foot in flectoparin afterwards and try to relax my body among all the pillows possible. Also this groups are great, having s place to open up for people that are going through this and knowing that you are not alone it's awesome. I hope you guys have a good day! By the way my doctors say that operating with CRPS can always bring CRPS back to stage one in my case without the possibility of taking NSAIDs it has to be a life or death matter. But read the researches any cut or minor injury can cause an inflammatory reaction and worsen CRPS. I also have a scar on my tendon under the Halux that I cannot operate because of the risk of bringing back the CRPS, so yeah it's always the choice between bad and worse. :/ well I hope my English was good enough to express myself and not be impaired by my gigantic brain fog, well peace fellow warriors my back burns I had tea and a cracker to have my citol

Dec 12, 2015 1:30 AM

Whatever medicine of the morning and try to sleep again.

Dec 14, 2015 2:34 PM

Well tommrow head to regina to the hospital

Dec 14, 2015 3:53 PM

All the best! Sending good vibes!

Dec 14, 2015 8:50 PM

Thanks let ya knows what happens when I get back

Dec 16, 2015 5:46 PM

Good news it didn't spread and I'll walk again yes hurt a bit but did it have to go back to physio again and get the pain under control 😁

Dec 16, 2015 9:05 PM

Welcome PaulaCRPS! I don't have CRPS but I understand chronic pain. I have multiple issues that cause chronic pain. The last EMG I had was very unpleasant. And I hope it was the technician because I have to have another one on my legs and hands. You'll be in my prayers. 🙂🙏🌼

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