I have suffered complex regional pain syndrome in my upper right hand,arm,shoulder for 18/19 years. I have been diagnosed for 4 years. I was referred to a pain specialist many many years ago to be told repeatedly I was making this up in my head. I took myself away from my pain specialist for a few years to sort my mental health out thinking I was losing my mind was I making this up and if so why does it hurt so much? I ended up going back to the pain clinic it was the same specialist he yet again went on to tell me this was all in my head so I asked for a 2nd opinion, had an appointment with this lady who diagnosed me with crps after 15yrs of fighting then I had to go back to the same pain specialist again (now he believes me) but did not help just sedated me with medication. So I then asked for a new pain specialist. Finally got 1 in the 1st 1hour appointment with this new guy he has given me so much information exercises etc he got me a Physiotherapist which I had been repeatedly refused for many many years and have been paying private for 5yrs he also got me a psychologist and is reducing the medication that is leaving me severally sedated. I wish I fought for a 2nd opinion so long ago. The last 18yrs has been utter hell but finally I have someone who has listened to my voice it took 18yrs but things are finally looking up.
The point to this post is if you are not happy with a doctor,specialist etc always ask for a 2nd opinion its so worth it. I no longer feel insane.
Hi Leanne, thanks for posting. I'm sorry to hear about your long term chronic pain, it's no fun at all and made even worse when people you know and doctors don't believe it or doesn't take it with any degree. seriousness. I myself have had some friends call me a hypochondriac (how would they even that there's nothing going wrong? I don't recall them being wired in to my nervous system haha) and have had a long list of times that I've been to the doctor, with many of them seemingly showing no interest.
I've had persistent fatigue, fogged-over thinking, difficulty concentrating on tasks and non stop aches and pains in joints and muscles, and like you, concentrated pain in right side wrists, elbows and shoulder, with also the same in my right hip and knee. I've had this for 7 years.
When I finally did get somewhere, I was diagnosed with 'symptoms consistent with CFS/ME' but haven't had any more progress from that. To be honest I've given up looking for help and am just trying to live with my condition.
Very well done in your tenacity with getting medical help, and in you dealing with your condition for so long. Your post has inspired me to keep persisting with some kind of treatment, so thank you. I'm glad things are finally improving for you.
Hey Tom, I am sorry you have been suffering for so long also, it is very frustrating when you're voice isn't being heard. My new pain specialist said leanne you have a voice for a reason please always speak up. Chronic pain is really hard to explain to someone especially the ones that just don't understand. Although ud think the most understanding ones would be you're pain specialist thats what there qualified on right? Wrong 😭 my 1st pain specialist was not sympathetic at all and made me feel insane. A fresh set of eyes are always essential especially if you aren't getting anywhere with you're current specialist. Please keep fighting for help. I know it is extremely stressful and exhausting, but You're life matters and it is important for you to be comfortable. I also lost a few friends due to my illness but it was for the best as they clearly weren't true friends in the first place. I have met a good few friends on my journey also and there just amazing and understanding. Wishing you all the best Tom and always here for a chat.
Hey Leanne, thanks your kind words and for the prompt reply I agree it's incredibly frustrating not being heard, that's why in recent years I've fallen into a state of apathy towards my health, and well most everything else, I guess as a mechanism to keep myself (relatively) sane haha.
I guess pain is such an abstract and subjective feeling, that those who haven't felt it in a chronic sense can't imagine it and so disregard it as a possibility, which is really, really annoying haha. I often been very confused as to why many health care providers don't seem to care, I imagine it's because they have the mental, but not emotional acuity, to have studied for and gotten a job in their field, irrespective of any feelings of empathy towards others. I guess it's just a job, nothing more to those ones. Don't get me wrong though, I've had some really decent and attentive doctors too.
I have a slither of fight in me I think, to want to do what is necessary to get better, but it's something I need to develop more.
It sounds like you lost the right friends, as people that care about you would want to support you surely? I'm glad to met others that were understanding of your struggles, I'm hoping to meet more myself. I may have to take you up on that chat, thanks very much
Pain is extremely soul destroying, I only accepted my pain about 2 years ago thats because I was told I was making it up for so so long then when I did get a diagnosis and told nothing can be done I just couldn't accept it. I think a lot is acceptance. Although its so so hard sometimes. It's important to fight for the right help/team do you have anyone that could do that for you? My dad and sister helped me a lot they were my voice when I was just to sore to talk or even concentrate.
You will certainly meet a lot of people on here. Is there any groups in you're area with the same condition?
My advice is to always listen to you're body if you're tired sleep/rest us chronic pain sufferers push ourselves so much that fatigue gets extremely overwhelming. List me today I just woke from a 4 hour nap 🤣🤦♀️
Hey sorry for the delayed reply. It really is, especially when it looks like there' no end in sight to it. Being told you making it up is maddening, I don't get why some people can't understand, given how immensely complex a persons biology is, that something maybe, just might go wrong and that some people experience extended pain?
I agree acceptance is a big part of it, I think I mostly accept, although go through phases of depression and anger at how I feel on a daily basis, especially with life commitments. I think I tow the line between acceptance and defeated resignation (which I know isn't good haha).
I'm glad to have your sister and dad as a support group, you definitely need at least some people backing you morally and emotionally. I live in a town on the west coast of Scotland and the nearest places with groups are 40 miles away (and I haven't learnt to drive yet). So really, I guess I'm just looking to connect with people with similar issues online.
I've done the long nap thing many, many times, always wake up feeling really groggy haha.
Hi I never say much I don't really think I should now but I've had RSD/CRPS for 20 years it was great once I was diagnosed by a specialist called Dr Roy he really helped me for a few years until he retired, but I've basically been left to deal with it on my own with the medication I've been put on!I need help but no one listens 2 me
I'm gonna be 52 on Thursday I don't know how much more I can take,
It's spreading & there's nothing I can do to stop it! x
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I agree it's incredibly frustrating not being heard, that's why in recent years I've fallen into a state of apathy towards my health, and well most everything else, I guess as a mechanism to keep myself (relatively) sane haha.
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