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Not Diagnosed by British Doctors.. CRPS 2

Posted , 2 users are following.

Ginagirl
Ginagirl

I have a History of Back problems from repetitive unprotected heavy lifting back in the1980's as a young nurse of 23 then a Fall down stairs at work in 1984 on a wet floor... Nursing for 33 years only part time post 1984.. due to the back issue. Not much support or Pain intervention by the GP in many years although I complained and had an MRI to prove the condition, have just put up with it and visited my Oesteopath.. My back inury was purely tand wholly to do with poor Health & Safety.. Now I am suffering what is known as CRPS 2..To my Left Foot ..When it happens it is excruciating swelling hot skin they keep saying its cellulitis  I have said NO it is Not..The Doctors DO NOT want to recognize this condition due to it being thier liability.. Pain on touching even a sheet..and non weight bearing during an episode at least 2 weeks. It rules my Life.. I am lucky I have a daughter who fetches and carries for me..bless her. doing what I did but for other people's Mum's in hospital for the elderly in 1980's UK. My concern is the people who should accept liability are paying me an injury Benefit at the minimum payment ..and lied in thier determination. Makes me sick how I put my Life out there when I was young to help people ..Now I am suffering more because of my compassion for the old and infirm..I feel depressed at times and get anxious when I cannot do things and upset, as I was always a doer.

I was told I have CRPS 2 by an online specialist due to the damaged nerve L5/S1 to my Spine (Chronic) and debilitating..When the pain of this arises I have to be doped up and in Bed to elevate my foot ..I often emmerce it in a bowl of Iced water which gives me some relief..temporarily. Any advice would be greatful! We are in July thus far I have had this 4 times since January..I dont get out much like I once did.. No Family Support ...or Professional Nursing Support, Daughter Only.

..I retired from P/T Community Nursing in 2009 and have been getting worse since then as I am less mobile. Over excessive mobility just aggrivates the condition.

0 likes, 4 replies

4 Replies

  • alsion
    alsion Ginagirl

    Posted

    Hello, 

    I've read your posting and I feel for you. I have had the condition for four years now. It is unrelenting and never goes away. The only difference is sometimes I can manage to walk with one stick and can get some sleep and other times I walk with two sticks and am up most of the night due to pain. 

    I work full time as I am a lone parent. I have an adapted left foot drive car and am lucky enough to be able to park beneath the building I work in. My mum who is now 75 does all my housework, gardening etc. it is hard for her.

    I was diagnosed by a specialist at my local hospital and attend a pain clinic, psychology and various help groups. Mine occurred after a routine repair to tendons in my foot as I was a heavy walker and had caused damage to them pavement pounding. I have tried to claim compensation but have now given up. 

    I see you say you get relief from cold water. I have found any water, even in a shower makes me vomit due to the pain, so this is a daily problem. Due to so many tablets I have now damaged my oesophagus due to repeated vomiting and reflux. I'm not sure what you are taking but I am on gabapentine, amotriptyine, naproxen, Zopiclone , co-codomal, an antidepressant and lidocaine patches to put on the foot. 

    You really need to find a specialist who deals in this condition. As it is mind/body related mindfulness exercises are a godsend. I went on a course or 26 sessions to learn how to use these exercises and now can zone out watching the cursor on my computer at work flash!!

    so, all I can say is to keep mobile as not using it will make it worse. I can't put my heel on the floor so have walked on toes which in itself causes problems, but mobility is the key. Push to see a specialist and a psychologist and just continue to do as much as you can . I have had guenathedine blocks in the past as these can help, but unfortunately didn't in my case. It is worth a try. 

    Beleive it or not after continuous pain you can live a life of sorts as you become accustomed to the pain being there. ...no matter how bad it becomes"

     

  • Ginagirl
    Ginagirl

    Posted

    How you can work with all these conditions.. it will send you to an early grave.. I am sorry to for you too.. i have an Auto lucky that might right leg functions well. I am on Codiene Effervescent 500-1000 mgs and Naproxyen antiinflammatories Bendrofluiside tabs (DIURETIC) If I miss these my foot swells more..it is such a weird sensation at the start of the flare up ..The upper aspect of my foot is so painful I cant walk and this puts me off my feet for weeks at a time and I dont get out much. this makes me depressed ..Your Doctor has NO idea by the sound of it? I really dont believe it is in the Mind .. I have a damaaged Nerve in my spine.. and had this Chronic condition since I was 26 (41 years) this has become worse since I do less in the way of walking/catch 22 when I walk on it too much it flares again. Cannot win>>

    https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

    • alsion
      alsion Ginagirl

      Posted

      You have a physical condition in your spine. In my case the operation on my foot apparently went well. There is physically nothing wrong with it. The problem that occurs is the signals from the brain causing me to feel pain. 

      I have since got fibromyalgia which is a knock on effect of a chronic pain condition. I was lucky enough to get on a ten week session group with a,professor who has both conditions and studied it because of that. It was truely an eye opener.and he advocates mindfulness for it. Without these exercises I couldn't work. I can zone out now which helps me through any peaks of pain which get worse from any stress. It has been proven that crps becomes much worse when anxious or low. Mine increases with any heightened emotion...even laughing!! 

      I have appointment next month with consultant and am going to discuss spinal block. Not sure if worth risking. We have discussed amputation but he has assured me that it has been shown after amputation the pain can spread to stump or even swap to another limb. This is were it differs from phantom pains. A man local to me has recently made headline news by cutting off own hand after being refused amputation. The condition is known for making the body want nothing more than to rid it of offending limb. Rachel morris,  paraolympics cyclist had this happen to her. After amputation the condition spread to other leg and then to arm. Incredible really but proves that doesn't necessarily have to be injured for condition to spread. I think this is were mirror therapy comes in, but unless done in early stages it doesn't work. My ex husband lost a leg in accident and mirror therapy tricked brain into thinking limb still there and so stopped phantom pains. Guess works same with crps by making brain think the limb is Ok. 

      With regards keeping sane...I don't and have had numerous cry for help attempts on life. But teenage son keeps me here and bloody great mortgage keeps me working!!!! 

    • Ginagirl
      Ginagirl alsion

      Posted

      It is all very depressing, not really having much choice.. You must look after yourself..Sort out the Finances ..I was forced into early retirement  back in 2008 from a Stress breakdown and physical pain and depression causing me anxiety and exhaustion I have withdrawn from life somewhat for my own preservation.. Have had little help from the professionals.. Being one myself I manage my own life and management with help from my daughter .. who is my legs..  Spinal block is only a Quick fiix! you need long term plans and look into getting Financial Support. Give up work and care about yourself /ESA/PIP. Whist you stress and try to keep going in your life ..Noone will listen.  Mindfullness ?? what is this Mind over matter.. not sure I believe this works..I have been positive in my life kept working whist in pain..but hence the result I am in now. Retired and out of the mainstream of work.. I have a NHS Injury Benefit to live off of ..as they were liable for the damage. Now I suffer 50% of the time from an inability to walk.

      Try this website they are very good for Benefit Information and pitfalls.

      http://www.benefitsandwork.co.uk/news/2836-newsletter-16-july-2014?utm_source=iContact&utm_medium=email&utm_campaign=Benefits%20and%20Work&utm_content=A+16+July+newsletter+2014

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