crps help

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I've been diagnosed with crps in the foot after 18 weeks of pain and tests, ending up having to pay for an mri scan, just needed to talk to someone who is also suffering .TIA

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  • Posted

    Sorry to hear hear of your financial burden but unfortunately it is a necessary evil. I'm on my 10th doctor and last oral medication after 2 years of constant pain from the base of my skull to my fingertips on the left side. I have had every test done know to science and finally been diagnosed with CRPS 1. I go for my first ganglion block in 2 weeks. I will  make one suggestion though, get a DNA test if they are trying to find the correct cocktail of medication. Good luck to you.

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  • Posted

    Awe Judith.. I think we all hurt a little bit when we hear of someone else starting this journey. It's yours now, and best thing you can do is take a deep breath and research as much valuable info as you can. You've just been diagnosed with the chronic disease who 'has the unfortunate honour of being the most painful chronic disease known'..so you need to find s pain specialist who is well educated of CRPS /RSD,and get in to see him or her and find out what their philosophy is for pain control and what plan they would have for you. Hku need to get some relief so you can get your head wrapped around this. I'm a 20+yr veteran RN and I had never heard of this disease and what an education it's been. Please don't hesitate to let us know what's happening and how you're doing, as we are here to help offer comfort and suggestions based on our experiences (I'm 2&1/2 yrs into diagnosis, have had it already spread to another limb and organs. I'm on 7 different pain meds and a brand new spinal cord stimulator) That doesn't mean any of those things are going to be you but you do need to prepare yourself and your family.

    There is valuable info out there as well as the RSD/CRPS foundation who do wonderful awareness and promotion and gets you in touch with other 'warriors'.

    Be strong, be brave and now we are here to help. Keep us posted.

    All the best

    Andrea.

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    • Posted

      Omg that sounds so scary, I've never felt pain like this.at the moment I have managed to just stay on gabapentin and co codamol at moment. tried morphine but wasn't good on it. I am still managing to hold my job down.

      Jude

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  • Posted

    Hi Judith my name is Carol I have CRPS in my left foot, can I help? I've had it for nearly five years now going in for a back operation after being dropped in hospital! Been living with it ever since! Xx

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    • Posted

      Mine just started out of the blue, do u have swelling, my foot is enormous and part of my leg. Sitting here now I could scream with the pain, and after reading Andrea's reply above sounds so scary. Its nice to be in touch with people in the same position x

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    • Posted

      Hi Judith

      I have some swelling in my left foot but my pain is mostly in the hip and groin so left foot and left arm (where it started after herniating a disc in my neck) tend to be on the 'cold ' side of things with temp change and colour change tends to be more on the bluish /mottled with the vascular contributions..

      Are you able to tolerate any physical therapy at this point?

      Hang in there

      Andrea

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    • Posted

      I am going to have my first hydro therapy tomorrow as I can't weight bear on my foot, I went to physio once and they have refered me to hydro. I'm going on holiday in 2 weeks at least I can hang it in the pool all day

      Jude.

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    • Posted

      Good news!! It's also good you have no sensitivity with it either! Does it have colour or temperature changes at all? Do you get flares? Ru on FB we cud chat properly on there? Carr Xx

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  • Posted

    Judith, I don't have CRPS, but my son does and I could imagine all the feelings and wondering. I have watched my son and felt helpless because I could do absolutely nothing. What kind of symptoms are you having to this point ? My son's started with a football accident and he went to one of those Physicians Care places, my husband took him and they said that the woman just felt up at his collarbone area and said it was cartileage and that he would grow outta it. Things just kept getting worse and he kept complaining with it and we finally took him through the ER and they referred him to an Ortho and it turned out that he had dislocated his collarbone from his sternum. Later we found out that he had an extra rib behind his collarbone, they even sent him to a doctor that usually does surgeries for Thorasic Outlet Syndrome. They kept sending him to physical therapy and that was only hurting the situation. Then one day he got outta the shower and said Mom my hand is so cold and I was peeling potatoes and I had him to touch me with the othe hand first and when he touched me with the affected hand it was so cold I naturally looked and it was blue, all the nerves were being compressed in between the collarbone and the extra rib, anyways I had a Chiropractor that I've been going to for year give him some adjustments and got it where the nerves weren't being compressed and it seemed to get better and then outta the blue he started having pain in his legs and I thought I'll take him to the Chiropractor and see if he can help first and when he saw how his leg looked he asked my son to tell him all the symptoms that he was having and he knew exactly what was going on with him because his daughter had been diagnosed with RSD when she was 8yrs old so that finally got us on the right track and I feel like that doctors office should owe something, because had they had caught it and it not went on for almost 2 yrs then maybe just maybe my son wouldn't have wound up with RSD. I just don't know how someone can look at something and see it potruding out like his collarbone was and say it was cartileage when they should've took an x-ray. People in general just don't care the way they used to. I'm sorry to carry on but this whole disease has been out there for over 100 yrs and they haven't found a cure yet because nobody wants to believe that somebody can be hurt like that and have that much pain and live but I'm sorry they are just crazy because your the only one that knows how your body feel's besides God of course and I just want to say that I wish you the best of luck and I hope somebody help you really soon. They say if caught in time things aren't as hard as they could be, so I hope they caught you in time to get you some relief. Let us know how things go with you  and God Bless and Keep you is my prayers.

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  • Posted

    I was diagnosed with CRPS about 13 weeks ago. Feels like I have been poked and pried at some much and so many tests later. What has helped me tremendously is PT (physical therapy). They have helped me gain some mobility in my foot again. And have given me exercises to help control the pain. My orthopedic says that up next is to try a nerve block and see if that will help me gain some feeling back in my foot. And also help with the tremors in my toes. If you have any questions will be more than happy to help.

    Are you feeling ok? What kind of pain do you have?

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