Bi-lateral Upper Extremity CRPS

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I was in a car accident in September of 2013. My right hand was honking the horn when the airbag deployed into my palm. In November of 2014 I was diagnosed with CRPS. I had my second opinion last January when I was also informed of how my life would change. I went back to work in October 2014, almost a year and a half ago. I've been out for two weeks in pain from a fall I took four weeks ago. I worked through the week after the fall.......it doesn't really matter all the hub bub, but can anyone tell me how long it took for them to actually accept the diagnosis? I'm 43 years young and having the hardest time accepting it. It's in both my hands and arms, I've had 21 Innerscalene nerve blocks and I just am having a hard time dealing with the fact that this beast is real.

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  • Posted

    Hi, so sorry, i am 43 with crps also. Firstly i think you are amazing, you have this awful condition and still manage to work, all credit to you. I dont think you ever really come to terms with having crps, but i find having friends who also suffer with this awful condition is a must. Just being able to speak to someone who actually does understand what you are going through is a relief. Maybe your gp could refer you for professional help, be it counselling, psychologist, assessment for appropriate help. I see a lovely lady based at my gp surgery, having someone outside the family to talk/rant/ cry to does help! We also do meditation, which i never used to believe in but i do now, it really does help to relax. There is a good book out there, mindfulness for health by Danny Penman and Vidyamala Burch. crps-uk is a good one to join, they have conferences and get togethers and a good group forum, other sufferers who understand. Have you been offered an assessment at Bath? An inpatient stay there could help too, it helped me view crps differently.

    i wish you well, just remember you arent alone, there are a lot more of us out there than you may think! x

     

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    • Posted

      Thank you so much for your reply Sarah. I am actually in the US but found this site yesterday in my desperate search for some sense of me. I have totally lost myself. I am seeing a chronic pain counselor tomorrow and probably a psychologist. On top of this my mom has stage 4 fungating skin cancer. What a horrible thing to deal with.

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  • Posted

    Hi hon, take a deep breath and think about your future. It's so important to keep a good attitude because this stuff can take you down fast. I've had CRPS in my left arm, then it moved to my face and head after I accidentally ran into a glass door and now it's moving into my left leg. I hope you have a doctor who understands and cares because that's so critical to your healing. Donot be afraid to talk to a professional if you need to

    This is a huge change in your life. I wish you the best.

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  • Posted

    I am so sorry to hear about your mum. You are dealing with so much. I hope  you get some help at your appointments. You have to push for help unfortunately, but please make sure you do. I dont know what is available in US, but we are here any time you need to talk!

    please take care of yourself x

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  • Posted

    I feel the same way I have type 2 in my left hand and had a triple fusion in my neck and since my crps2 has gotten worse .I just had the trial simulator taken out about 2 hours ago and a appointment will be set for me for the permanent simulator, I'm not even sure I want it.I'm having a hard time believing this is real.I haven't been able to use my left hand in almost a year the pain started in my phone about 2 years ago and has spread and as of last month it's now spread to my head I haven't been able to work in about a year because I type for a living and I cannot type with my left hand. It's hard for other people to understand how intense the pain is. The beast in a very good way to describe it
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  • Posted

    Yes im 45 years young and have CPRS 2 in stand and it recently has spread to the back half of my head , I'm having a very hard time accepting this. I type for a living and I mail it on able to type so I haven't worked in almost a year had a triple spinal fusion because I thought that was causing the pain in my hand and was diagnosed with CRPS while healing from my surgery..im depressed .im getting a nerve simulator put in next month to ease the pain in my hand but now what do i do about my head? I feel like this monster entered my life and took over..dont know if i will ever except this..i pray for you..
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    • Posted

      I'm so sorry you have this too. I used to think my hand was hard to deal with but the head is worse than everything put together. I'm goung to Stanfird to a CRPS specialist in April. I will share everything I learn with you. Hopefully we can help each other.
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    • Posted

      Thank you debbieo. I wish the best for you.!y nerve stimulator will be put in this Wednesday. I will update
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  • Posted

    Hi Brandi,

                     You do not say if you are having Physio...it is the only way to get through it...I had my first bout of CRPS in 1995 and it took the best part of 2 and half years to get to a point I could use my hand and 7 years to be relatively severe pain free. I was told I would never use it again; Physio sdaved it. 

    I now have it in my other arm/hand and have had 33 sessions of Physio and it is getting much better already...i could not even move it back in August.

    Get Physio and go three times a week at first; your consultant or doctor knows it is a must with CRPS

    Linda

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  • Posted

    Hi Brandi, i am 50 and have had CRPS in left foot and limb following a bunion op in 2011. I struggled with acceptance until i was referred to a pain management course here in the UK. This was run by a pain nurse, a physiotherapist, an occupational health professional and a clinical psychologist. It really helped. Is there anything similar in the US? i agree with Linda that good Physiotherapy is the key to successfully finding some remission from this debilitating misunderstood condition. Even with PT any recovery is slow. I have had more than 3 years PT as an out-patient and now still have a regime of exercises which i follow every day. From the research i have done myself it seems that movement is the "cure" yet it is this and touch that hurts so much. My therapaist started with fairly tiny stretches and progressed slowly. There is hope, i was on the verge of beginning to have to use a wheelchair, not only could i barely walk i lost all physical strength and now well when i have finished writing to you i am going to take the dog for a 20 minute walk something i could only have dreamed of even 2 years ago. When i read your post i was wondering how you are managing to go to work, it must be imposssibly hard i really feel for you.

    ​As you are in US look up Dr Hooshmand, i think he has now passed away but he did lots of very interesting studies on CRPS. There is alot of info to take in but i managed to read alot of his stuff over time and just felt better having more knowledge.

    ​I read somewhere about some exercises where you dont repeat the same exercise, i think this is possibly to do with neural pathways but what you do is write the letters of the alphabet in the air. This might be really painful for you at present so you just do A and then tomorrow AB and so on. I was sceptical about this but i now include it in my daily practice and am noticing a small, gradual improvement especially when my foot goes cold and stiff as opposed to hot and burning.

    ​There is no doubt CRPS is truly awful and very difficult to cope with, i had some really dark times and still get extremely frustrated that my body can't do what i want it to, my whole left side is still weaker than the right side of my body. What i have accepted eventually is there is no quick fix, i had to research the illness myself and finding any positive stories was difficult which is why i wanted to share mine on here, i had to educate the medical professionals and people in my life about CRPS, i may have to do these exercises and pace my activities for the rest of my life but it is so much better than i thought it was going to ever be. I once thought of my foot as a "beast" and wished it could be cut off. This might sound strange but some of my acceptance came about when i changed (slowly) my thoughts toward it. As part of relaxation and meditation, deep breathing it helps to think of your hands and arms not as something separate which you hate (i sure hated my foot) but as something you love and wish to re integrate with the healthier part of your body. i know this sounds a bit way out but again i think its about neural pathways. My GP always called it "the beast" and i actually got to the point where i had to ask her to refrain from using the term because it was negative! Get me!

    ​Sorry i have rambled on a bit here but you will find friends here and people who understand and believe your pain. Wishing you well xxxx.

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    • Posted

      Wow! You just described every feeling and path im starting on.its in my hand and my head.i just had a nerve stimulator put in 5 days ago and its helping some but yesterday i ended up in the er do to sever muscle spasms in my right leg just below where my battery pack is.im in my primary dr offi e right now and after herei head to my pain management/ surgeons office

      I felt so angry at this ( beast) for changing my life.i can no longer type and thats what i dofor a living so i no longer work and i have gained 40 lbs.i at the point i have to except the ( beast) and treat it as part of me and try to be more positive towards it.i know this all sounds crazy but if anybody is gonna understand its the people in this group.thank you for sharing your experience and thoughts

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  • Posted

    So sorry so terrible I feel the same exact way. I have it in my hand and on my forearm in my other hand in my foot in my calf now my skull hurts on the pillow lately eyes hurt. Know one will know what you are going through a will say they feel your pain but they don't they have no idea how your life was normal one day and then the next it's like you're a later you look like you're 10 years older. I tried to drive to the doctors today and had to have somebody come and pick me up to drive me home because I couldn't stand it anymore I feel like I'm stuck in my house and like some kind of invalid and I used to be so anal I had to have everything done perfectly and it's just so hard to deal with so sorry you go This also
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