Please Help
 

So far 4 MP's have got back stating they will help in the call for a debate on RSD/CRPS.
If you have contacted your MP already but heard nothing back Please send another e-mail stating 4 have joined but their support is vital if you haven't or didn't see my original post
My MP is going to ask parliament to debate our situation/condition, on his own he is unlikely to succeed so if you want the government/health dept to do something to prevent others going though what you have please e-mail your MP today.
Tell them the name of this condition. That it is the worlds most painful incurable one and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. That 95% of the NHS have never heard of this condition but according to figures in a paper published by the Royal College of Physicians last May there maybe 480,000 sufferers on the UK and less than 20,000 have been diagnosed That is approx 760 undiagnosed for every MP.
Ask them to read these links and spare 5 mins to watch the video.
http://www.rsdhope.org/crps-symptoms.html
http://www.rsdhope.org/mcgill-pain-i...in-ranked.html
http://www.youtube.com/watch?v=MviVcjWZDts

Tell them that Iain Stewart is going to call for a debate on this and ask, beg , plead whatever you feel is appropriate that they contact him ASAP to offer their support in anyway they can.
Please don’t think I’ll do it later do it right now.
Kevin

I'll get back on to mine today Kev :)

Done!
 

This is what I sent....sorry for the length of it, but I got no reply to the short version!

Email to Lawrence Robertson, MP

I have CRPS (Chronic Regional Pain Syndrome). You will probably never have heard of it, which is something I deal with all the time. Everyone knows about cancer and MS and many other conditions that are frequently in the media, but CRPS is little known and devastating, and dealing with the ignorance of not only the public at large but also 95% of the NHS adds to the daily burden of just existing with the constant pain and physical consequences of this horrible disease. CRPS is a physical condition with physiological symptoms which can be seen and felt, it is not a psychological disorder, although it causes depression and other problems due to the pain and loss of quality of life.

Iain Stewart MP is going to call for a debate on CRPS, the worlds most painful incurable condition, and if you could please spare the time to find out a little about this most misunderstood, misdiagnosed and painful of conditions, and agree to support him in getting this debated, I and hundreds of thousands like me who suffer from this will be eternally grateful.

I am 42, and my husband and I have 2 daughters in school. I have had CRPS for nearly two years following a simple knee operation which diagnosed a type of knee arthritis. I was lucky to be diagnosed only two months later, two months of hell in which I could barely move and was in terrible pain that my doctors could not find a reason for. Many sufferers have to endure this for much longer before diagnosis, as it is so little recognised. I had to give up my job in a small shop as I wasn't able to walk well, stand for hours or climb stairs safely any more, but rather than claim benefits I have started a small part-time business, which at least means we have part of the income I used to bring in. Since i was diagnosed, my CRPS has spread to my entire left leg and foot, and my right foot. I have had some symptoms in my left arm and back as well and am working hard at physio therapy to fight against it. I am lucky to now have a great physio, but for a long time I saw people with no knowledge of CRPS who seemed unsure of what to do. I have learnt a lot about this condition so that I can protect myself.

My symptoms are very variable. Some days are terrible and I struggle to move about at all, on others I am able to walk short distances and pretend to be more normal! I am in constant pain which varies in type and intensity from a cold deep bone pain to a burning searing pain. I take minimal medications as I have had problems with side-effects and with drugs just not working on the pain. The pain is the most frightening aspect, because nothing seems to touch it. CRPS pain is notoriously difficult to treat adequately, and of course doctors are traditionally wary of prescribing strong opiates that might have more of an effect. I find the limited options for treatment frustrating. My pain specialist has been helpful, but there are more options to explore that are made so difficult to get by the NHS system. I am currently looking for a GP who is willing to take me and the CRPS on, as I have found it difficult to deal with GPs not knowing what to do for the best. I have crutches and a wheelchair now, which I use to give me more scope outside my house. I used to be very active with my children, was chair of a Tennis Club, and really loved to play as much as I could, but now a suitable sport is very difficult to find, and the simplest of daily tasks are painful and take so much longer. My husband is amazing, but he works full-time running a small business, and I am well aware that this disease affects him and my daughters daily too. I feel that I (and they) have lost so much of the person I was.

Although CRPS is recognised as the most painful and disabling of conditions, 95% of the NHS have never heard of it - but according to figures in a paper published by the Royal College of Physicians last May, there may be 480,000 sufferers in the UK, yet less than 20,000 have been diagnosed. That is approximately 760 undiagnosed sufferers for every MP. Many of those diagnosed are unable to obtain adequate pain relief - a basic right of every patient, according to the NHS - and are often viewed by medical staff as drug dependent junkies looking for a fix, when in fact they are diagnosed patients suffering the kind of pain most people are lucky enough not to be able to imagine. CRPS heightens normal pain responses, and a subsequent injury can initiate spread of the disease from one area to another. Even the insertion of a needle into a vein is a risk for a CRPS patient. This has massive implications for the A&E department setting, and all contact with medical practitioners, the vast majority of whom know almost nothing about CRPS. Sadly, there are many who think they know how to deal with a CRPS patient based on their general knowledge of pain, but CRPS is very complex, and inappropriate or delayed treatment can have devastating consequences.

Please please contact Iain Stewart MP as soon as possible to offer your support in anyway that you can. There is so little awareness generally about CRPS, and a debate on it in the House of Commons would help us so much, and hopefully prompt more research. My biggest hope is that NHS staff and dentists are educated about CRPS so that care and treatment for all sufferers is improved.

I know you have a great many demands on your time, but please read these links and the partial Wikipedia entry quoted below, and spare 5 minutes to watch the video.
http://www.rsdhope.org/crps-symptoms.html
http://www.rsdhope.org/mcgill-pain-i...in-ranked.html
http://www.youtube.com/watch?v=MviVcjWZDts

If you have read this far, then I want to give you my sincere thanks and support. If you would like to discuss any of this with me then please do contact me, I would be happy to help in any way I can. I hope to hear from you soon, and to know that you are willing to lend your support to Iain Stewart, MP in calling for this debate.

Yours sincerely,




Brambledog :winky:.

******

Quoted from Wikipedia:

Complex regional pain syndrome (CRPS), formerly reflex sympathetic dystrophy or causalgia, is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS is expected to worsen over time. It often initially affects an arm or a leg and often spreads throughout the body; 92% of patients state that they have experienced a spread and 35% of patients report symptoms in their whole body. Recent evidence has led to the conclusion that Complex Regional Pain Syndrome is a multifactorial disorder with clinical features of neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivity or allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by an aberrant response to tissue injury. Treatment is complicated, involving drugs, physical therapy, psychologic treatments and neuromodulation and usually unsatisfactory, especially if begun late.

CRPS is associated with dysregulation of the central nervous system and autonomic nervous system resulting in multiple functional loss, impairment and disability. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.
Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND), or algoneurodystrophy, does not have demonstrable nerve lesions. With the vast majority of patients diagnosed with CRPS being of this type, most of the literature thus refers to type I.
Type II, formerly known as causalgia, has evidence of obvious nerve damage. Type II CRPS tends towards the more painful and difficult to control aspects of CRPS; type II scores 42 out of 50 on the McGill pain scale (however there is seemingly little or no data pertaining to type I specifically here). In Type II the "cause" of the syndrome is the known or obvious nerve injury, although the cause of the mechanisms of CRPS Type II are as unknown as the mechanisms of Type I.

CRPS has the unfortunate honour of being described as being one of, if not the most painful long term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth. Lack of social awareness has inspired patients to campaign for more widespread knowledge of CRPS and lack of clinical awareness has led to the creation of support groups seeking to self-educate with the latest research.

Evidence suggests that CRPS has both physical and psychological factors. CRPS is said to cause physiological problems (rather than physiological problems causing CRPS); whilst "research does not reveal support for specific personality or psychopathology predictors of the condition" there are psychosocial factors to CRPS (such as reduced quality of life and impaired occupational function) and psychological problems (which include increased depression and anxiety). Unsurprisingly, there is overwhelming evidence of limbic system involvement. Sadly this very poor quality of life for some has led to high rates of depression and suicide among sufferers, which has motivated appeals for greater understanding. The AFPS leaflet on CRPS and prevention of suicide is available online.

Daily vitamin C has been shown to reduce the chance for the occurrence of CRPS after an injury, leading to calls for greater awareness, especially in the emergency room setting. In two placebo-controlled randomized clinical trials Zollinger et al. showed that patients who took 500 mg of vitamin C daily after a wrist fracture were less likely to incur the problem. The cause of CRPS is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site.

With the growing body of evidence persuasively indicating the progressive and systemic implications of chronic CRPS, there is concern that these patients may be erroneously also diagnosed with fibromyalgia. Fibromyalgia has a MPQ score of 35.7/50, whereas CRPS averages a 42/50 MPQ. Chronic CRPS patients would react to the pressure points of the brachial plexus, the intercostobrachial (ICB) nerve and concomitant L5-S1, injury. Similarly, when patients with multiple sclerosis were tested for CRPS, incidents of the disease was more than 50 times higher than in the average population. This has led to calls for research and more understanding of chronic CRPS symptoms which may include muscle twitching and tremors, wobbliness, falling and visionary disturbances.

As Complex Regional Pain syndrome is a systemic disease, any organ could potentially be affected. There are many internal complications which are frequently not acknowledged, "CRPS affects the systems of: cognition; constitutional, cardiac, and respiratory complications; systemic autonomic dysregulation; neurogenic edema; musculoskeletal, endo-crine and dermatological manifestations; as well as urological and gastrointestinal function".

Bram, I am not in the UK, but this an excellent explanation and depiction of CRPS/RSD. Kev and Bram, I hope your letters/emails to your MPs prove successful, and that a debate on the subject is granted.

Amazing If we get the debate I want a lot of presscoverage. Would you be willing to draft the release.
I want it titled Parliment to debate the sucide Disease.
Then to start known as such in America where in the long term 25% of sufferers take there own life.

Of course I would, and thank you for asking me. Fingers crossed we get a response.

Have you asked this question on other sites with British CRPS participants? I know that KneeGeeks has several British sufferers on it, and there must be other sites too, and Facebook pages.

Bram.

I'm going to be writing to my MP from the perspective of someone newly diagnosed and the ways in which the lack of knowledge and awareness about the disease affects me at what I must say is a very difficult time.

However, I do not, as yet, have any experience with the NHS in relation to this. So far, I have been dealing with private doctors through my insurance. I don't even want to think about dealing with my GP for this. I had to tell him what to prescribe for my migraines. He also thought the torn cartilage in my wrist was arthritis.

I've written to my MP about it and have had a reply suggesting he's interested in finding out more and will be attending the debate. Yes. I know he's a politician and is hardy likely to say anything else!

I've been really lucky with the NHS. I've had a great consultant, an excellent physio. I've also been fortunate to have a GP who has come across the condition and has sensible suggesions. I've passed this on to me GP, along with an explanation that this is rarely the case

Have you got a link to KneeGeeks searched but keep ending up on Knee guru and get this

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KimA
Thanks Please include as much from my opening post as you see fit, can you say that you have mentioned it to your GP and he knows niothing about it

It's ok Kev, I'm a member of KneeGeeks, I'll put a thread up on there today with the info from your opening post :)

Bram.

To Laurence Robertson, MP

I wrote to you on the 24th May 2013 regarding Iain Stewart MP needing support to call for a debate on CRPS in the House of Commons. He has 4 MPs in support so far with others being petitioned by their constituents, and if you were to add your support to the growing numbers it would be enormously appreciated. This is a very important issue for myself and others like me who suffer from this crippling and little-known disease, and I am disappointed that I have so far heard nothing from your office to even acknowledge receipt of my e-mail. I know that you must be very busy, but is my understanding of Parlimentary rules that a member of the ruling party is required to take up his constituent's concerns with the appropriate Minister, and I hope that you will respect your party's ideals and support a disabled constituent who voted for you in the last election.

:winky: Just a small poke in the ribs...

Bram.

A reply!
 

Got a reply at last....well, an acknowledgement at least! Hopefully he will reply in more detail, I responded and told him politely that I hoped he enjoyed his holiday and looked forward to hearing from him soon....:winky:

"I am away from my office today so can't check my past emails, but will do so later. I was on holiday from the 24th and have received over 2,000 emails since then! However, I apologise if yours was missed and I will look into the matter and get back to you.
Best wishes
Laurence Robertson MP"

is there something the people in America can do to help as well. I mean we are all in this fight together and if we all scream in one loud voice . it makes it hard to ignore..

You could always write to the Prime Minister, David Cameron? If you mention all the same stuff, and Iain Stewart's name, they should be able to connect the dots... Do a copy to Iain Stewart as well, then he knows what's going on. All the email addresses should be on the government website.

Great idea! :)

Bram.

E-mailed Cameron and clegg Oct 2010 No reply again 2011 no reply 2012 Cameron said it was a matter for the health dept desite 3 times getting a automatic e-mail saying clegg was busy but would get back to me he never did

Very true....BUT if they cc (send a copy) to Iain Stewart as well, then it won't matter as much. Plus the more people who shout something, the harder it is to ignore - we could do with getting a newspaper onside, there are several out there who seem to like a nice health-scare/weird science/conspiracy of silence type of story?! Not to mention a few TV doctors who could be petitioned to take up the cause?

The sad thing is that it is very easy for anyone to ignore a single person, or a few, but if enough folk stand up together then sooner or later people do take notice. Unfortunately it requires a lot of coordinated effort, and that's not an easy thing for a community like CRPS/RSD sufferers, who are statistically few in number, and already using their energy to fight through constant pain.

I am thinking (on the hoof, so it might be rubbish!) of perhaps a blog or website with different standard letters, posters, info etc available to copy, and lists of addresses and people to send them to? The hardest thing sometimes I find is concentrating for long enough to actually write what I want and make it good enough - maybe if all people had to do was copy the text, add their name and address and send it, it would be easier for more folk to do? We could maybe have a monthly 'target' person or organisation to send stuff to, so that our efforts had more impact in one place at a time?

I don't know what the answer is, but I'm keen to fight while I'm able to :winky:

Bram.

Same time I e-mailed 60+ TV and Radio Staions newspaers and magazine no one replied. Dr Hilary 3 times nothing,Thats why I want you to do a press release when we have a date. I'll work out the gerenal guidelines over th next few days ad e-mail it to you. I have sinc ct 2010 sent over 1000 e-mails Iain is the only one to take it up. Prince harles said e was too busy memer of the House of Lords sid itwas for the health Dept to deal with the rest jjust ignored

Well done Kevscar! That's a lot of mails....I've barely started lol :) better get moving!

Bram.

My MP (Laurence Robertson) has mailed me to say that he has now contacted Iain Stewart and is awaiting his response...

Fingers crossed :)

Bram.

Nice one extra to make upto 10 characters

Still no reply from my MP. I will need to email him again. He's Labour but he should still be willing to support Iain Stewart on this.

Took me 3 mails before my MP got the idea, which as I understand it is pretty quick...:rolleyes: Just keep going!

My MP mailed me today, he is on board :) I told him how grateful I was.

Kev, I've made a good start on the press release. Be as quick as I can, but I'm off on holiday on Saturday! Do you need it before I go or can it wait until the 15th or so?

Bram.