I'm lost and confused

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I was diagnosed with CRPS a couple of days ago after battling with it for 2 years but the doctor didn't explain anything to me about what was going on with the disease and after reading online all these horror stories I'm scared to death I don't know what to expect all I know is he says I have the symptoms of CRPS so he's going to send me to a pain management specialist and when I go back to him in September symptoms of CR PS so he's going to send me to a pain management specialist and when I go b with workmans comp and I'm afraid I'm going to be left all alone with no kind of support ack to him in September he's going to put me at maximum medical improvement with workmans comp and I'm afraid I'm going to be left all alone with no kind of support. I'm a single dad and I don't know what to do and I've got nobody I can talk to you about it and it's stressing me out

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  • Posted

    David,

    I'm so sorry if u do in fact have CRPS. Please tell us your symptoms and how it all started. We're not Dr's on here, but we who live with this horrific disease, know the symptoms. And if you do have CRPS, there are several support groups we can point you yo for support, because your going to need all the support you can find. You're also going to want to find a pain management Dr that knows about and CRPS. Most PM's know very little about the disease.

    Praying for better days for you,

    Browneyes58

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    • Posted

      I broke my right ankle and tire tendon in January of 2015. Since then I've had 2 surgeries the first one to repair everything but after wards I remain in so much pain I couldn't do my therapy because of the numbness and tingling in that foot with constant pain that would make it hard to get out of bed this went on till December of this yr while it kept getting worse my therapist suggested crps then and put therapy on hold and sent me back to the doctors. He said it was possible he didn't think so he figured the nerves where rapped with scare tissue so we did another surgery that was in June. Things have continued to get worse since Dec I'm still in constant pain which has gotten worse now my left hip and lower back has the same symptoms. When I do sleep which is very little anymore I wake up feeling like I'm trying to lift weights for arms and leg they burn and stinging and all my joints feel stiff and swollen like jammed them.

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  • Posted

    Hi browneyes thank you for responding I got hurt at work Jan of 2015 and fractured my tibia and tore 2 tendons in my right ankle at first the workmans Comp dr said it was a sprain I worked on it for 3 months of Duty when it didn't get any better they sent me to a podiatrist who found out that I had damaged it that bad so we did a surgery to repair everything. I was in therapy for about a year but I was still in pain and numbness and tingling in my right foot and it wouldn't go away at constant pain so my therapist put everything on hold and sent me back to the doctor and he said that I had the nerve encased in Scar Tissue really bad so we did a second surgery back in June of this year. And I was still having the constant pain hand burning anything touches that foot it feels like someone stabbing me with a thousand needles and the swelling won't go down and when I do get to go to sleep which isn't very often anymore because I can't sleep with covers or anything touching that foot or my legs I wake up with my entire body numb and burning and my joints feel like I've jammed up so I went back to the doctor last Wednesday and he said that I have RSD otherwise known as as CRPS he thinks but I don't have the constant sweating in the affected area and left it at that he ordered more physical therapy for another 6 visits and said that when I come back on the 21st of September if there hasn't been a significant Improvement then he was going to put me up MMI 50% with a diagnosis of that RSD but he didn't explain to me what any of it was all I said was I needed to see a pain management specialist to help me get through this

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    • Posted

      David,

      Thanks for sharing your story. You should be grateful you have a Dr that diagnosed you. It's very hard to diagnose and everyone is different.

      Mine started in my left leg and due to an emergency lumbar surgery in February, it has spread to my other leg and waist line. I don't particularly sweat in just those areas, but my entire body pours with sweat. It makes me feel horrible and it's very embarrassing!

      Some are helped with PT, but it makes mine worst! My Dr has waned me to do water therapy, but again, the tempature change sends me into orbit! I have a pool and have not been able to get in it and enjoy it the past 4 years.

      As others have said, do lots of research. You will be your own greatest advocate! Be informed! Most Dr's know very little about this horrible disease, so you must know!

      Prayers for answeres and days of less pain for you all CRPS sufferers!

      Browneyes

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    • Posted

      Hi David

      Just wanted to agree with brown eyes and say that I don't necessarily sweat in the affected area, as well my affected area isn't always discolored and swollen, although remains very painful. I do whoever have symptoms of extreme alloever sweating and temp change as well.. As has been said, we're all a little different, but at the same time, the same. And coming here and sharing and reading what others have shared, certainly has helped me with validation and acceptance.. 2 of the most difficult (for me) parts of this disease.. And having said that, and just to clarify,, by therapy, I meant psychotherapy.. The physiotherapy has varying success rates and can be very difficult both phsyically and psychologically. I tried the desensitization therapy which resulted in my kinesiologist and I both crying on the floor.. But hang in there, hopefully you will find the thing that works for you, but I do find that having someone to talk to, and help you develop some coping mechanisms is the most important thing, as you may know it's also nicknamed 'the suicide disease'.I read that something like 70% of warriors consider it at one time during their struggle.. In can be a very long, tiring, complete life changing, and isolating time.. That's why we need each other too.. Are you in Canada? If so, PARC (Promoting awaremess of RSD/CRPS) can suggest pain specialists that are experienced with this disease..just an FYI

      Hope to hear some good news from youn soon!

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  • Posted

    Awe David.. It's so overwhelming at first, and hopefully you will get s great pain specialist as I did, who will walk you through the process.. It takes a lot of research and support (also therapy, so get started on that as soon as you can). Your life I'm sure already has been turned upside down, but now at least you have a name for the face, and try and think of that as empowerment. As well, you've reached out here, and that's a huge step to helping you get through this. Take in as much info as you can handle (without getting too overwhelmed.. Remember each patient Is different in their experience) we will help you through it. Many hundreds of cyber hugs from CRPS warriors coming your way.

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  • Posted

    Hi David dont be afraid try to stay possive thats the key factor with this illness and to catch it early like your consultant has is already a plus side!!
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  • Posted

    David, my son has CRPS or RSD whichever one you want to call it he had a football injury and was complaining with his shoulder area my husband took him to one of those physician care places and they told him that it was cartilage and that it was normal and he would grow out of it so my son took what the doctor said and thought he would be fine but time went on and he kept hurting so I noticed that on one side of his collarbone it was poking out at the sternum and we found out that his collarbone had dislocated at the sternum and everyone kept saying that he would grow out of it, but he didn't. I was getting supper started peeling potatoes and he had gotten out of the shower and he said Mom my hand is so cold, since I had a knife peeling I told him to touch me with the other hand first then touch me with that one and when he did it was so cold I looked and his hand was blue so off to the ER we went the symptoms got better but this year in March he was hurting in his leg and it started being discolored and had bluish tint to it and cold to the touch and I thank God that he was seeing a Chiropractor at that time that was working on his shoulder because we found out that he has an extra rib behind his collarbone and through adjustments from the Chiropractor that was getting better but we were telling him about my son's leg and he saw it and ask about symptoms were and he told me that my son had RSD, no doctors knew anything about it but my Chiropractor daughter has RSD since she was 8yrs old so he went through alot of things with her. My Chiropractor knew a doctor that could take care of my son because he took care of his daughter. We have been traveling about 131 miles every month to see him. I tell you one thing that helps my son is taking a Ibuprofen and a Benadryl together because that helps with the swelling and get you some B12 and take that about 3 times a day and take the Ibuprofen & Benadryl about the same the B12 helps the nerves to heal so 3-4 times a day with the B12 and the same with the Ibuprofen and Benadryl cause they help with the swelling around the nerves my son takes this everyday and he is also on Lyrica and that's for the nerves and swelling. You need a Doctor that either knows what RSD is or a Neurologist who is familiar with this Disease because it is a nerve disease so regular pain medication usually doesn't work or it didn't with my son. He has had this problem for about 2 yrs also and before we went to Atlanta he had been on crutches for a little over 2 months he couldn't walk without them. Our first visit was June of this year and he's finally walking again and wants to run but can't yet.. My son just turned 16 in July and he is scared to get a license and drive because he is afraid he may hurt someone. It is a struggle everyday and he has days that are alright and days that are bad.. He has been so strong though. David keep your head up and keep searching for the answer and I will be praying for you and I hope you get relief soon. The med's I told you about will help some though and I hope you can get relief soon.

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  • Posted

    Hi David ??You are not alone, and I'm so sorry for your pain.  I slipped on ice January 5, 2014, and also was diagnosed with CRPS.  Please connect with RSDSA!  Please continue reaching out!  I am very happy to have fumbled upon this site, to find your honest and forthright post.  Please keep in touch.  I must walk my dog now, or I would offer more insight.  Norton; my ESD is essential to my wellbeingsmile. Please don't give up, because everyday is changing.  One moment at a time.  Thank you for reaching me and others with your heart and voice.  I am not leaving, just walking.

    Beth

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