New to site & looking for support

Hi everyone, like a lot of you this is my 1st time doing this. I was diagnosed the beginning of May 2016 with CRPS aka Complex Regional Pain Syndrome and naturally I am more than a bit freaked out about it. According to what I have read this is a Rare thing here in the US (1 in 200,000). This can last a few years or be lifelong. Not exactly encouraging so I am looking for support groups I am dealing with this the best way I can think of which is to stay positive. This actually started in 2013 with golfers elbow, then the tendon tore surgery to repair it beginning of 2014, then ulnar nerve dislodged so surgery to relocate the nerve mid 2014. Surgeon said 6 months to a year recovery time, so fast foward beginning of this year still in pain so back to surgeon had EMG done results 3 different things going on with my arm so I am sent to neurologist and here I am. The pain that started with the elbow now goes from my neck down to my fingertips. Any advice is helpful & gladly taken! I do apologize for the length

12 Replies

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  • Hello g3b1gk7 and welcome. Very pleased to have you in our Community.

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  • Hi, we have a few crp sufferer's on this site but maybe they are away as I know that if they saw your post they would reply. Hang in there for a little longer. X

  • Thank you lowlife, I appreciate that you have replied to my post & I will continue to look here @ least once a day probably more

  • Hi g3b1gk7 I have had crps for 6 years and in that time I have had my left arm and my right foot amputated I also have it in my right hand and arm last week I have seen my pain specialist and have been told that I will loose the use off my right hand in the next 6 to 12 months so I know my life will be over before that happens. I hope u get the right help and treatment as quickly and make sure u get the right meds to help with the pain I was unlucky it took the specialist about 8 months before I got any treatment by that time it was to late,

    Best wishes and take care

  • Thank you for replying I am very sorry to hear that your diagnosis was so late that it resulted in amputations. Please stay as Positive as you possibly can as You are the Only YOU there is. Please feel free to message me if you want to talk about all this, seeing everyone's replies while making tear up I know that I am not alone and have found people I can really talk to about it, my GP is not really up on CRPS

  • Hello. Sorry to.hear about your diagnosis. Don't be alarmed by talk of amputations that is still a rarity thank goodness. I was diagnosed in 1980 and retired from work. The disease has progressed to all joints bar my right elbow and ankles..It affects bladder and rectal control. I have a lot of really severe spasm some of which is ongoing under anaesthetic and although my heart is 100 per cent OK I do get arrythmia from time to time.. I also have difficulty swallowing. And yes. A lot of pain. I have never felt much burning pain.. I feel cold as ice and it's a warning. Get somewhere warm fast. Now for the positives. Pushing 67I am still here.. I live alone with two Parsons Terriers and I have no daily help. I Potter about doing my own thing at my own pace. When I need to rest I do. I have a veg garden with raised beds plus a small back garden which is decked with a swing. Weather permitting (UK) I idle my time away reading and playing with dogs. Pain control. I am allergic to morphine. I manage with Pregabalin, Dihydrocodeine and Diclofenac suppositories. NO anti inflammatory drugs as I get sick and have diarrhoea. No hospital either. My disease is managed by my Gp with advice from Addenbrookes. My treatment is spot on with current thinking so basically I paddle my own canoe. Yes there are dark days but I play computer games engage my brain and force it to think of something else. Basic rules take care of yourself. You come first. Look after your skin be aware that ulceration can occur especially if you have little feeling. Finally lol look up Philip Getson. I am taking his advice and have started a gluten free diet. I have so much more energy now. I actually get up and get on with my day. Feel free to pms me if you wish. And please be positive life is worth every minute of living xx

  • Thank you for replying. I am sorry to hear that yours has spread across your body & all the meds but YOU are Not alone sounds like you have 2 wonderful4 legged family members with ALL the time & I find that you are able to do gardening fascinating as well as fabulous & encouraging. I will be messaging you, Yogibe as well as everyone else to talk more about this lovely predicament we are all dealing with

  • Thanks for getting back to me. I don't post much as my disease is so progressive. When diagnosed there were only 6 reported cases like mine worldwide so cases like mine are a rarity. In my case there is a definite familial history plus a genetic neurological disorder. But, I was very distressed about the post of amputation. Be on the ball , look after your skin. I have a varicose ulcer but it does heal and the breakdown is usually not CRPS. Lately a bee sting to which I am highly allergic. Bad enough the pain without bits of you disappearing. In time your body will get used to the pain then you can decide your path forward. I will be forever grateful to Addenbrookes Hospital but after 20 years with the research lab I decided that I wanted to find my own way and since then my Gp has been in control The disease is a way of life you pick what is important to you and aim that way For years I did horse riding which kept me fit plus muscles working now I potter around my very small estate Work is always ongoing I drive an automatic camper van it has a bed ideal should I need a rest I frequently drive to Scotland 360 miles but all in one go I have an electric scooter to walk my girls. I craft a lot and I garden. In essence I try to keep my mind busy. When all else fails, like today I go to bed. But I did have a grand day out yesterday. Keep safe xx

  • I deal with the pain as best I can daily & like you when it is unbearable I lay in bed play games on my phone or the laptop. Like I said before my GP is not really familiar with. CRPS so I think I might know more then she does. It was a neurologist that gave the diagnosis, he sent me to a pain management clinic but unfortunately they do not take my insurance. I am currently looking for 1 that does but so far no luck. I am also currently looking for for a doctor here that is at least some what well versed on the subject in my area. I take hydrocodone with acetaminophen for the pain and lyrica for the nerve they work ok but I know that's not going to be a long term solution. I live with my husband, 2 of our 4 children which are 18 & up, my Mom, a cat and a dog. Which means I do have some help. I also help my Mother in law who was recently diagnosed with Parkinson's on a daily basis. We also have 6 Granddaughters with1on the way. I no longer can pick up the baby I can hold her but not for very long 10 min if I am lucky. My worst fear is not being able to hold the babies so I am hoping with all my heart that I will be having "a good day" when #7 is born. So far I can still drive and do a few household chores but it takes a lot longer than I am used to as well as exhausts me. Sleeping has become more challenging as well. I am assuming that part is normal for the condition. I do hope that if I have questions on this you won't mind me asking you.

  • I urge you to visit Dr Phillip Getsons website. He tells it like it is and I am beginning to restrict my diet to see if anything helps. I can still pick up my dog at 23 lbs for about ten minutes. Trouble is none of us want to risk more pain. My fur babies understand about brief cuddles and when to have them. Suppose it's all about getting comfortable and finding your way. I am glad you have help but it's time to put you first. I really enjoyed my day out but not the day from hell yesterday. I use a lot of magnets especially in car so I am comfortable to drive. However, rough ground and an electric scooter don't mix. Strange what web sites think is wheelchair friendly access. I am not house proud and that is fortunate but the cooking and washing up get done asap and I blame the open fire for the dust. I have a downstairs flat and all rooms are tiled for easy access and my small back garden decked. My veg are in neighbours lot gardening not his cup of tea. Sleep can be an issue. I take it when I can. I find the earlier I go to bed the better the sleep. 6 hours is a long night. Now I have an hour in bed after lunch. I have only once been to a pain clinic they told me to drink brandy if the pain was bad so I dispensed with their services. My best advice to you is to potter and rest when you need to. Until I encountered this website I had never "met" anyone with CRPS although I was diagnosed with Algodystrophy. The condition appears to have many different names. I tinker with my medication. I always take the morning dose otherwise pain would be too severe. I use a 1-10 for pain when its approaching 7 I try stretching, heat pads, low grade massage pad and finally my breakthrough dose of DF118 bearing in mind I have had DHC continus about 5 hours earlier. I am at my busiest first thing. I use diclofenac 100mg suppository I am allowed one daily. I take it when the pain gets to 9 almost always from open leg ulcer. It helps my knees as well. I also use an Actipatch loop on my left knee as it locks straight v painful had the problem all my life only had CRPS since I was 27 not diagnosed until aged 30. The pregabalin at more than 200mg daily causes my eyelids to shut. No driving no nothing. I felt like a zombie. Now I take 150mg am and can repeat if I need to. I was on Amyltryptilene 30 mgs at night but I had to take it before 8 pm and kept forgetting. No difference on or off so one less per day. Planned arrangements can be difficult I know that any stress makes things a whole lot worse. I will be in touch shortly xx

  • Hi,

    Thanks an awful diagnoses to have. My friend and co-founder of Painfully Strong - we are setting up a support group for those in chronic pain in Northern Ireland has CRPS and has had it for quite sometime. Whilst the face to face support group won't work for you you can find links to our FB page and email and Michaela's story on our website: painfullystrong.co.uk - she would be delighted to offer you any support or guidance for this awful condition.

    Lou xx

  • Thank you Lou I will look that up

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