Crps disease my illness

[Ozark203]

Hi peeps I'm.a crps sufferer I'm née here 30years old lad , looking for help with understanding my illness and living with it with someone who actually understands it. Regards jack

[Scotsman53]

Hi, I was diagnosed with CRPS in 2017. It's not gone yet but I'm convinced it's going, it's certainly an awful lot better than it was. I think the best thing I can tell you is search online for Tamara Gurin, her book is inspiring and she spends a lot time giving advice in forums etc, tmswiki.org/forum/ is a good one.

[PainGo1 in reply to Scotsman53]

What treatments have you had that have improved the pain or is it just time?

[Scotsman53 in reply to PainGo1]

No treatments have helped but it's not just time either. You might find this hard to accept, maybe even very hard, but the fact is, there are psychological aspects to CRPS. People need to educate themselves, not just rely on the medics!

[PainGo1 in reply to Scotsman53]

Did you injure yourself originally? How did it start?

[Scotsman53 in reply to PainGo1]

It's a long, complicated story, seems to have been due to a number of incidents.

[Imagine1 in reply to PainGo1]

Hi, I developed it through an injury that never healed. I broke my ankle 3 years ago and I didn't receive the correct treatment, it wasn't put in a cast or airboot. I have been walking on a broken ankle and because of this I have now developed pain in other areas of my body connected to this. My ankle has now got cartiledge damage and the pain I now get is worse than the actual break, doctors are telling me that I shouldn't still be in so much pain and that is when they eventually diagnosed me with CRPS. A lot of doctors won't diagnose people with this though because they don't understand it. A lot of people will probably have this condition but they don't know about it because they keep getting fobbed off.

[PainGo1 in reply to Imagine1]

My pain started the same way with a foot injury that wasn't taken care of by my GP at the time. I developed CRPS over the following months and I was reluctantly given a letter to confirm this last year, after 4 years of seeing health professionals who couldn't help.

[Imagine1 in reply to PainGo1]

It is absolutely disgusting isn't it? how we have been treated. My accident was a simple one, I fell downstairs my ankle twisted very badly, I couldn't walk and my husband had to carry me to the local hospital which at the time we lived next door to. Then the treatment was a complete shambles from there and 3 years later I am still struggling to walk. My foot swells up at night and I have to raise it up to take the swelling down. This shouldn't have happened and this is why I have now developed CRPS. I damaged my hand at work and need an operation but the surgeon has told me that because I have CRPS then after the operation it could get worse and he advised me not to have it. I had my Gall Bladder removed last year and since then I have had problems with pain but no one told me not to have the operation, so now I am in double pain and it is all because of the initial care that I never received.

[PainGo1 in reply to Imagine1]

And this is something that affects us for the rest of our lives. I still remember the lack of interest 4 years ago and the pain and distress this caused me which I understand contributes to the changes in the way the brain now perceives pain.

[Imagine1 in reply to PainGo1]

You are exactly right. I tried to sue the NHS for the disgusting care that I never had. I am left disabled because of the NHS, I tried to sue them, It took 3 years, with 3 different solicitors and I was told that the case had gone to NHS resolution and that they will pay me £30,000, that was one week the following week I was told that they are denying liability and they are not giving me a penny. So I was advised by my solicitor to contact the Health Ombudsman, which I did, it took them 4 months to get in touch and they are not taking the case on because it is past the 1 year of being able to claim anything, how could I contact them when I was using a solicitor and surely the solicitor would have known that it has gone past the time limit? so now I am left disabled, where before I was fit and healthy and I struggle to work. To me someone has to pay?

[PainGo1 in reply to Imagine1]

I'm in exactly the same boat as you. I contacted a solicitor within the 3 years and was told my accident was not the fault of the company I was working for at the time, although the injury was caused at work and that it was just an unfortunate accident. My GP said to me a couple of weeks ago, well you have just been very unlucky with your leg. That's not consolation for the fact that she could have had it X Rayed sooner, put in a cast, boot, anything to prevent me from limping for 6 months afterwards which has damaged my Achilles tendon and brought on chronic leg pains that come on when I stand up. I can only stand now for about 3 minutes, if that. And the worst part is knowing that every time you visit a physiotherapist, masseur, doctor, acupuncturist, they all just look at me with pity and I know they are unable to do anything about it after all this time.

[Imagine1 in reply to PainGo1]

I can't believe how similar our problems are with our limbs. I think it is shocking how people can get thousands of pounds for something minor, like an insult or a stubbed toe yet people like us get ridiculed and get nothing. It wasn't our fault what happened, for a doctor to say you were just unlucky is awful. The NHS were supposed to care they don't give a damn now. They just go on strike all the time and put patients lives more at risk. What if something like what we have been through happens to someone else while they are on strike? I bet they wouldn't be able to get compensation either. My accident happened 2 months before everything was shut down, all that time wasted when I could have got the treatment again not my fault. How can the Ombudsman not take on my case when all the country was shut down, but they still won't and it is disgusting. I am going to speak to my ex solicitor and see if he can help me with the Ombudsman? I am not holding my breath though.

[PainGo1 in reply to Imagine1]

I wish I had gone to another solicitor and fought my case now and got the compensation I deserved instead of struggling on. Yes the NHS has changed and I dread having to visit my GP now.

[Imagine1 in reply to PainGo1]

Solicitors are a complete waste of time. They talk a good game at the beginning and then years down the line they say, sorry we can't do anything at all, they are denying it. Why doesn't the solicitor give us a realistic hope of getting anything.

[PainGo1 in reply to Imagine1]

Have you found any treatments that help your condition at all?

[Imagine1 in reply to PainGo1]

No I haven't. I used to take Ibuprofen because this is the only pain killer I can take, I am allergic to opiates and opiods. The problem is now it looks like I have a stomach ulcer due to taking this medication. My doctor didn't know I was taking this and she has told me to stop immediately, so now I can't take any painkillers at all.

[PainGo1 in reply to Imagine1]

Was the stomach ulcer caused by the Ibruprofen?

[Imagine1 in reply to PainGo1]

That is what they are testing me for? I am having a tube down my throat but luckily I am being put to sleep in a different hospital, they won't do it at my local hospital. The doctor thinks that if I do have a stomach ulcer it will be due to the ibuprofen, I don't think it is because I didn't take that many to make a difference. I think it is because I had my Gall Bladder out. I have had nothing but problems since having it out.

[PainGo1 in reply to Imagine1]

How long did you take Ibruprofen for?

[Imagine1 in reply to PainGo1]

I took them for about a week, 3 times a day and I was told by the doctor that I was taking too many, that is why I don't think the ulcer is because of that?

[PainGo1 in reply to Imagine1]

It doesn't sound like they would be enough to cause an ulcer. Did you use the stomach protection tablets at the same time?

[Imagine1 in reply to PainGo1]

No I didn't, I bought them from a chemist, not off the doctor. I never knew I had to take something else with them?

[CreativeKitty in reply to Scotsman53]

Tamara Gurin’s book being delivered today - paperback copy £5.99 on Amazon. Looking forward to reading it.

[Andy-1978]

Hi Jack, welcome to the family.

Firstly you need to know that everyone's case is different some people will go into remission whilst others unfortunately will only decline over the years which follow.

I've had CRPS since 2014, unlike the majority of cases being caused by an injury, mine was due to cancer. I was successfully treated through surgery and high doses of Carboplatin Chemotherapy. I have CRPS in both my legs.

You seem to be new to the family and your probably still going through the emotions, denial/acceptance/anger etc etc. But that will fade overtime. Find yourself an anchor sounds stupid, but to be honest with you CRPS is also known as the suicide disease were patients have chosen to end it. Find your happy place, embrace loved ones etc. For me my anchor has been my children and I am fortunate enough to have them in my life.

In addition to the advise you have already received, I am going to share this wisdom with you.... "If you don`t use it, your loose it" I was told this by one of my physio therapists. Meaning that no matter how much it hurts try to use your limb(s) as much as possible.

Lastly always ask in forums but also double check what advise you may choose to take. Sometimes what we think is the right path for us can cause us more pain in the future.

Good luck

Andy

[tracey253]

Hi.You may well already be aware of Burning Nights, but I recommend looking them up online - burningnightscrps.org/crps/...

it's a charity specifically for people with CRPS.

[CreativeKitty in reply to tracey253]

I signed up to Burning Nights yesterday!

My first post on this forum. I’ve not yet had a diagnosis but everything I’ve read over the past week resonates with me.

Hoping to find help and support here and on Burning Nights.

[Scotsman53 in reply to CreativeKitty]

I'm not keen on them, too many scare stories, better to focus on success stories like Tamara Gurin's.

[CreativeKitty in reply to Scotsman53]

I’m looking at all the information I can find at the moment, I’m not into horror stories or miracles, so reading as much as I can, I hope I’ll formulate a balanced viewpoint!

[Scotsman53 in reply to CreativeKitty]

In my opinion this is the kind of case where positivity is more important than balance. Or maybe I should it's as important, we always need balance! I'm sure you'll find a way through it all anyway...

[tracey253 in reply to CreativeKitty]

HiWell done.

I am sure you will get some helpful information from them.