CRPS Sufferers

[carolbritton]

I was diagnosed with this illness four years ago in my foot, is there anyone close to Bristol area that has the same, do they have difficulty walking if yes what did you do to try to overcome walking?

[Hidden]

Hi I have crps in my right foot i have a wheelchair to get a round in that's because I also have crps in my arms and hands it was so bad that they had to amputate my left arm above the elbow and now my pain specialist wants to amputate my right foot,

how do u get around the place do u family help and support u

[carolbritton in reply to Hidden]

Oh my gosh I'm so sorry! Your very brave to discuss your illness! How long have you have this illness? my name is Carol I'm 59 married, two children, three grandchildren, I've had this illness for nearly four years it's in my foot like you, I was dropped in hospital damaged the ligaments in my ankle / leg, it's turned our lives upside down. With no light at the end of a tunnel? I've just tried a two week stay at Bath Hospital on an intense CRPS therapy programme, since coming home, I'm struggling, pain flare up at its highest!! Please can we keep in touch? Tc

[carolbritton in reply to Hidden]

Ps sorry yes I live with my husband, he is sooooo supportive, my carer / husband / best friend!! I'm really lucky! Like you get around in my wheelchair?

[Hidden]

Hi had crps 5years now u are lucky to have some one my partner she u to hit me and hide my meds from me and thanks to people on this site I got out but she found me and I got a really bad beating it put me hospital she and the three men that did are now in prison there pulled me out of my wheelchair and stamp on me I had to 3 operations on my shoulder I was going to have a operation on my hand but my pain specialist said no because off the crps in my hand it's bad any way don't know how long I have left before I loose the use of it then my life will be over

[carolbritton in reply to Hidden]

Gosh bless you how terrible?? Your partner doesn't sound pleasant!! He / she deserves to be locked away!! How old ru going thru all this alone do you have any family at all?

[Hidden in reply to carolbritton]

Yes she is locked up I am 54 years old I have one son who is also disabled and I have no other family I have cares that come in and help

[carolbritton in reply to Hidden]

Hi Yogibe

That's some relief I guess for you? everything sounds so awful how do you cope?

[Hidden]

carol could you and your husband come to London next thurs 29th we are having the first public meeting of the All Party Parliamentary Group for CRPS and need as many sufferers there as possible

facebook.com/groups/4997211...

[carolbritton in reply to Hidden]

Hi??? Sadly no I've going just been discharged from hospital not well enough to travel? Would to hear outcome tho?

[Jelusi in reply to Hidden]

Hi, I have CRPS in my hip/leg. I live in Kent but if I could make it can I come along to the meeting please ? Can you tell me more about the meeting please, I am interested

[Hidden in reply to Jelusi]

It will take place in room T portcullis House. I will be asking them to do 3 tings which if they agree will make history and give us hope. Professor McCabe will give a speech about our condition then coffee ad round table discussion after that drop in session for MP's ad Lords who could not make the earlier part.

We will all get together to see where we as a group want to go next.

[Hidden]

Please join our facebook page you will find everything there

[TwinklingStar]

CRPS is an umbrella term I think and there are various different types. They used to be called CRPS Type 1, CRPS Type 2 and Causalgia. (The previous sentence is INCORRECT - please see further postings by Kevscar who has very kindly corrected this for me.) I have Causalgia and this was later then classed as CRPS Type II. However, when I read up about CRPS my symptoms are very different. It is difficult to find articles about Causalgia because everything seems to get re-directed to CRPS! However, I am very sure I have Causalgia which is a type of CRPS Type II which is "Specific damage to a root nerve". This means that the damage has been caused by a physical event, operation, or even a simple needle prick.

I have a rare genetic Connective Tissue Disorder called Ehlers-Danlos Syndrome (EDS) and it very well documented that Causalgia can be related to EDS. The reason the root nerves have become damaged are due to the fact that people with EDS are extremely fragile in the first place so damage can very easily occur. The first damage occurred during an operation on my right foot. This was my 10th operation and so when I woke up I knew immediately that something was terribly wrong. Anyway, it was so painful that every step I take is like jabbing a fork into a tooth that needs a filling and the pain shoots right up to underneath my breast. My whole right lower quadrant from the specific point of damage (ball of foot) right up to under my breast is affected and this whole area included the right side of my bladder is constantly extremely hypersensitive to the point of finding it extremely difficult to tolerate clothing besides many other problems.

Unfortunately, I was only age 15 when I had the 10th operation and had not been diagnosed with EDS at the time although my Consultant had suspected a very similar type of Connective Tissue Disorder which has a lot of similar symptoms to those of EDS. This fact should have been taken into account as I had already been using crutches since the age of 13. Obviously with having EDS and having very flexible and fragile bones, joints, tendons, ligaments, nerves, teeth, hair, organs, etc using crutches ended up causing me multiple permanent damage. My hands, wrists, arms, shoulders and spine ended up being permanently damaged by using crutches as my body was far too fragile to cope with being forced to put extra strain on all these parts of my body.

Eventually when I was around 24 years old a neighbour who was very kindly helping me with things I could not do encouraged me to try a wheelchair. He borrowed from the Multiple Sclerosis society for me. This was the most amazing experience for me. At last I could go out to take my young daughter to the park, to the beach, and I could do all the things that I had not been able to do since I was around 11 years old - shopping, going for a "walk" outside in the fresh air. Just everything! It was wonderful. I only wish I had used a wheelchair far sooner. I should have started using one when I was 11 years old. My skin was so fragile on my feet that I would sit on the wall on the way to the bus stop crying because my feet and toes were blistered, raw and bleeding. By age 13 or 14 the school arranged for a taxi to take me back and forth to school. Of course, I didn't actually have Causalgia until I was 15. If I had only had the Causalgia then it would have been perfect to use the wheelchair at age 15 when it became obvious that the condition was permanent.

I was later damaged permanently during an epidural in the lumbar area. This was actually being carried out to try to relieve the pain in the right quadrant. They failed to inform the hospital that I had skeletal abnormalities and they could not find the epidural space and hit the nerves in my lower back. This immediately caused damage to the root nerves which affects me from my lower back, right up the whole length of my spine, back of neck, up the centre of back of head to the vertex (hairline at front of forehead). This whole area is the same as the other damage being so painful that I cannot tolerate anyone to touch me, or hug me, clothing is again difficult to tolerate and quite honestly it is very difficult to cope. I won't go on........because over the years I have been subjected to further damage because NHS staff refuse to follow correct procedures which could help prevent damage to patients with EDS.

I would advise you to look up Ehlers-Danlos Syndrome as CRPS is sometime related to EDS but ONLY some cases. Don't just think CRPS=EDS because that is certainly not the case. I was 15 when I was first damaged leaving me with Causalgia and I am now 59.

Within a week of having borrowed the chair from the MS society I had purchased a second hand powered wheelchair and the difference this made to my life was incredible - I just so wish I had one when I was at school so that I could have joined in normal activities and socialise properly and just to physically get around the school without being in constant pain and isolated.

Good luck. Only you can decide what is right for you. My condition is extremely complex with me having the EDS so I can't say for sure what my life would have been like if I had just suffered with the Causalgia. However, in my opinion using a wheelchair is far better than causing further damage to your body by using crutches. If you do take the option of using a wheelchair you MUST ensure you exercise regularly - swimming is a very good activity. It is crucial to find exercise you can tolerate along with your CRPS otherwise you will suffer permanent serious life threatening complications, from lack of exercise, to your body: weight gain, diabetes, heart problems, digestive system, and chemical production, etc. WE ALL NEED TO EXERCISE!

If you wish to contact me you can PM me and we can talk further. I hope something I have said will assist you in deciding what to do. It is not an easy decision as every person is different and my condition was extremely complex from birth because of the EDS.

Love and hugs to you.

Keep Strong

Love from Twinkling Star. Xxxx

[littleeffie in reply to TwinklingStar]

Hi and yes EDS is more than pain.I have had it all my life but of course I was just told I was lucky for having flexibility and fine skin.I'd laugh but the lack of knowledge even now is far from funny.The two youngest of my four children have been diagnosed with EDS too one manages to walk OK the other needs a wheelchair for distance but it worries me what else maybe in store in their future as in addition to the EDS I have Systemic lupus, Rheumatoid Arthritis ,fibromyalgia ,sjogrens and CRPS. There appears to be a genetic link of associated conditions yet a lot of medical professionals still take too long investigating new symptoms relating to them.

Educational awareness is greatly needed to stop the unnecessary suffering of those waiting years for correct investigations and subsequent diagnosis then following treatments.

OK off my soap box .

Wishing you all a lot less pain and a good night

[TwinklingStar in reply to littleeffie]

So pleased that you at least have early diagnosis for your children. I hope this will be able to help to prevent them getting so many injuries and damage caused by NHS staff who refuse to listen to the correct procedures regarding treatment of EDS patients.

Love and Hugs to you Little Effie.

from Twinkling Star

[littleeffie in reply to TwinklingStar]

Not too much trouble so far they were doubky extra careful and helpful when they had to have toe nail removals which was done under general due to local anaesthetic EDS problems and the fact that the toes took ten weeks to heal as slow healers was equally looked after with community nurse visits and clinic follow ups for three months.It is unfortunately the school that is the biggest problem who despite all the Information available still think that it means hypermobile joints which means they're lucky.They have an EDS expert friend apparently. No understanding how exhausting ,Painful and frustrating it is or that it can cause gastric problems. Then again they got annoyed at youngest having a few weeks off school and not keeping up with work due hospitilisation from contracting C-diff so think its as lost cause trying to explain anything to them.

Best wishes and gentle hugs x

[Hidden]

Sorry you have it slightly wrong the Reflex Sympathetic Dystrophy is now CRPS Type 1 and Causalgia is now know as Type 2.

en.wikipedia.org/wiki/Compl...

[TwinklingStar]

I think my post made is clear that Causalgia comes under the umbrella term of CRPS Type II. My post states: "I have Causalgia and this was later then classed as CRPS Type II." However, I find these new classifications very confusing and inaccurate and believe that RSD seemed to be a far better name for RSD (although not having suffered from it I maybe should not be expressing an opinion about it.) I also know for certain that Causalgia is extremely different when compared with the current descriptions of CRPS Type II. Causalgia was a far more appropriate name for it. I believe lumping these conditions under Umbrella Terms just causes complete confusion as can be seen by Kevscar's post above. I hope I made my post clear. Causalgia does come under the Umbrella Term of CRPS Type II. Names like Complex Regional Pain Syndrome are frequently misunderstood by Nurses and Doctors who just presume it is some sort of imaginary condition which is just in our minds. This is the reason why I preferred the more specific names of RSD and Causalgia. I am sorry if I made my post confusing and hope that Kevcar's post along with this later post of mind have clarified exactly what I stated. Love and Hugs to all of you suffering from these terrible painful conditions.

Love from Twinkling Star

[Hidden]

This line is what causes the confusion and why I posted "They used to be called CRPS Type 1, CRPS Type 2 and Causalgia."

[TwinklingStar]

Dear Kevscar, Oh Yes I see Kevscar why you made the comment now. Yes you are quite right I did make that very confusing and basically incorrect as you quite rightly posted. They used to be called RSD and Causalgia but are now under the Umbrella Terms of CRPS Type I and CRPS Types II. Is that better and more accurate? Sorry....I apologise for my error and thank you for pointing it out. I had it clear in my mind and wrote it down all wrong. My dyspraxia at work again! Thank you for you help in making the post accurate. Greatly appreciate your help.

Love and Hugs. Twinkling Star Xxx

[Hidden]

don't worry we all have short term memory loss and word problems

[Loulourixon46]

Hi Carol, I have CRPS in my right leg. I had a skiing accident in 2009. I broke my knee in three and severed the perineal nerve. The nerve damage meant that I have altered sensation from the knee down.( I am basically paralysed from the knee down) Very quickly after the accident it was very clear that I had done something very serious. I had surgery and that was followed by a blood clot in that leg. Later on I had nerve conduction tests and a needle into my muscle, repeated a year and a half after the accident. This revealed that I had permanent nerve damage. I also had developed a drop foot. I had surgery in 2011, I had an ankle fusion. After this surgery I noticed that my pain was much worse, I was sprouting course black hairs on my bad side, very dark hairs on the top of my foot! I couldn't stand anything touching my leg, breezes would even set it off. The pain by this point was unbearable. I was going back and forth to my go as well as my consultants. Sometimes my foot would be stone cold and blue ish, other times it would be blood red and on fire. It was incredibly swollen. The gp asked if I would like to be referred to ICATS, as they deal with pain . I said yes please, and I haven't looked back. The team helped to sort meds, courses were offered to help understand what I was going through, which helped me accept and move past, living with CRPS was made bearable. I was introduced to a wonderful Physio, who has worked with me on a one to one basis, which has been fantastic. I am very happy to chat with you, and will happily answer any questions etc. I was told that CRPS type 2 is rare, so it is lovely to talk to someone who understands because we are going through the same pain.

On the walking front, I still battle with the pain and walking. I wear MBT shoes which really help me, as they give me a more normal gait. However I have developed a condition called Dystonia, which affects the way the muscles work on the right side( CRPS side) it's making walking even more difficult than it was, as my toes are curled over, which means that I am walking on my toes, and that makes my foot a very strange shape. My Physio, suggested that I go back on crutches to ease the pain or get a scooter. So I bought a scooter, and it has been such an asset, it means that I can go out with my friends, and family. It has given me a sense of freedom back. And of course pain is less, as I'm taking the pressure off my leg.

I really hope this hasn't sent you off to sleep.

Louise 😀😀

[carolbritton in reply to Loulourixon46]

Hi Louise finally it's amazing to get a reply from someone that's gets it, thank you so much for replying to me!! It's sounds like you've been thru such a lot bless you. I would love to chat if your happy with that? What are the shoes you talked about very interested to hear more about the and the ICATS what that?? Sincerest wishes Carol

[Loulourixon46 in reply to carolbritton]

Hi Carol The shoes were recommended by my consultant. mbt stands for Masai bare foot technology. Look them up online. They are very expensive but they are worth the money, as I can walk better in them.

ICATS is the pain team I see. I rate them very highly. They have been fantastic, helping me, giving me information, working with a specialist Physiotherapist who specialises in CRPS. When I first got diagnosed I had no idea what was in store, I was just so grateful to have a diagnoses, which meant all the random symptoms made sense, I wasn't going mad!

Really lovely to chat Carol, maybe we can chat from time to time

Kindest regards

Louise 😀😀😀😀

[carolbritton in reply to Loulourixon46]

Aww... Thank you I will do that, I understand exactly what you felt as I too had never heard of our illness! It wud be great to chat are you local I live in Bristol? Maybe if you up for it we exchange email addresses? I can tell you all about my recent in patient stay at Bath Mineral hospital they specialise in CRPS their in Bath? It's brilliant to have someone to chat to! Luv Carol

[Loulourixon46]

Hi Carol,

I would love to chat my e mail is

[e-mail]

I live in Kent uk.

Hope you are having a low pain day

Louise x