Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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  • #8210
    foster1403
    Participant

    Hello everyone,

    I have been lucky enough to find the burning nights website to help me understand and educate myself with this horrendous illness called CRPS.

    I have been living with the condition for over a year and a half. Every aspect of my life has changed and it has taken sometime to come to turns with the possibility of it never going away.

    For the past 11 months I have been off sick from work after having a mini ‘melt down’ after not being able to cope with it anymore and after developing small blisters/ulcers across both hands and arms. These blisters/ulcers bleed to the touch, change in air temp, contact with water/clothing etc and not one single medical professional knows why this is happening, which I’m sure you can imagine is soul destroying.

    I am currently going through the ill health retirement route (at work) and I am due to see a selected medical practitioner tomorrow, who is acting on behalf of my employer.

    Yesterday I was presented with a statement from another Doctor (who examined me last December on behalf of my employer) which attempts to describe CRPS in 4 short sentences and has even got the name of the condition wrong! Anyone who reads this statement will think that CRPS will go away regardless of how long you’ve had it and there will be no possibility of permanence.

    I am reaching out to you lovely people, to see if you have any literature or links to articles that outline the issues surrounding the blistering/ulceration during CRPS, and also what happens if CRPS is left untreated? Anything that explains the possibility of permanence would be very very helpful.

    I am so sorry to bombard you all with such a frantic post but I am desperately trying to disprove the untrue statement produced by my employers doctor.

    #8218

    Hi Foster1403

    Welcome to the Burning Nights forum and thank you for posting!

    CRPS is a very stressful condition to learn to accept and to actually live with. It sounds like the areas where the small blisters and ulcers are forming is where your CRPS is, is this right? It is very soul destroying and you feel terrible and unable to cope, this is the main reason we are here – to help and support sufferers like yourself and everyone else affected by the condition.

    Unfortunately CRPS can cause ulceration and blistering as I am very well aware as it happened to me on both of my legs where the CRPS was. If you have a look at my story (I am the Founder of Burning Nights) you will find some pictures of how the blisters formed and ulceration occurred on my CRPS legs.

    When someone suffers from CRPS the skin in that area often goes brittle, thin and in some cases bruises. This is caused by tissue atrophy or tissue wastage. The thinning of the skin causes small cracks or cuts to appear. The skin may also have discoloured spots and this is a thick patch of skin that may peel. All of this is very common when a limb is unused for a long time usually due to the pain from the CRPS. After the skin starts to break down, that is when ulcers start to appear. If you don’t have any infection then some people have tried Hyperbaric Oxygen Therapy or HBOT to help reduce the ulcers.

    There isn’t that much decent research on ulceration in CRPS, but there are some studies: Tissue Hypoxia

    The final stage is if the leg is left with ulceration and no treatment is given in terms of trying to reduce the size of the ulcers could mean amputation, but many doctors don’t like to amputate due to the issues of spreading after amputation.

    Don’t worry about posting, we are here to help.

    Best Wishes,
    Victoria
    Founder & Chair of trustees for Burning Nights CRPS Support

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