referal info plz..........

[unhappy74]

Hi everyone just thought i would put a post up as i want to be tested for chronic regional pain syndrome and i do not know who i ask my doctor to refer me to get this testing done,anyone know..would be gratefully received also anyone else suffer with this syndrome would love to chat about your experiences in coping with this,many many thanks in advance to any replies and hope everyone has a pain free time as possible x unhappy74 x

[Hidden]

Hello, so very sorry to hear about your pain. I may be wrong but I think that complex regional pain syndrome is a conclusion drawn from symptoms and circumstances rather than an actual test. However the only experience I have is from a friend's diagnosis. Others here may well have more recent or personal experience. Either way I do wish you good luck in finding the answer.

Best wishes. Deb x

[unhappy74 in reply to Hidden]

hello Deb,thank you for reply to my post,i have been given the diagnoses of chronic pain syndrome but when i was looking it up to see what i could do to help myself more i stumbled across chronic regional pain syndrome,when i read it i was gobsmacked and it was like i had written how i feel and listed virtually all the symptoms i have,i am desperate to try to search for a answer as to why i feel the way i do all the time and how i can help myself so i can have some sort of life as my doctors have actually now said to me they no longer know what to do with me and want me to go into a residential home which ripped my heart out when they said that to me as it is never going to happen as i would never leave my family..unhappy74 x

[vivikin]

Hi have just been diagnosed with this and im afraid that dizasterdeb is right, i have had four years of mri scans and different treatments for this to be the conclusion and im sorry to say im still in pain, but talk to your doctor about it and he will know who to refer you to depending on your symtoms, what are your symtoms? if you dont mind me asking, also have you ever had an accident in the past to lead you to thinking this is what you have. i went originally to a back specalist and now i am in the hands of the pain clinic specialist, if you want any further info from me im happy to post my story or if you want to say on here what is going on with you im happy to post on this site to you about it if that makes sense, either way good luck with it and i hope you find answers and help and you will get that in abundance on this site.

love Vivikin xx

[unhappy74 in reply to vivikin]

hi Vivikin and others who have answered my thread

many thanks for your reply,my symptoms are the following,burning pain all over my body,chronic pain 24/7 really sensitive to even wind,it can leave me crippled in pain so i can not move,swollen joints,change in colour of my skin on my legs,skin feels very soft and thin and dry on arms/legs and my back,severe spasms in hands and feet but can also get them in other parts of my body,heat changes,my legs will be extremly hot when the rest of me is frozen,then ice cold for no reason,feeling the cold more,have muscle wasting on my legs even though i have been working really hard with my physio,my mobility is now nearly stopped,i am having to use a wheelchair due to the crippling pain i feel even if someone tries to help me and tries to hold my arm gently for example it feels like i am being punched,have recently noticed one of my legs is out of its shape,it looks and feels odd this one is really hard to explain but it feel like my legs are not my own,my hair has gone from being thick to really thin and my nails grow really fast(i dont know if this is to do with anything medical)i suffer daily falls,blurred vision and distorted vision,depression and a real sense of being alone even though i have my boyfriend and son with me and a very close family support,and i hardly sleep maybe lucky to get 2 hrs sleep even though i feel so worn out mentally and physically,i have broken several bones over the yrs being my back,my ankle that never was sorted out by the medical profession so has healed wrong,both feet also my right wrist,all of the above mentioned are swollen and hard to move including not being able to move 3 toes on each foot,my back is so hypersensitive(think that is the word) i can not bare to let anyone touch it and if they do i am screaming out in pain and crying,i am now at the stage i am trying to find the lightest items of nightwear or clothing as that even hurts to wear.I am currently taking duloxetine 60mg x2 daily,gabapentin x3 300mg a day but due to increase in next 3 days and so on,omeprazole 29mg x1 daily,paracetamol 500mg x 8 daily,ramapril 5mg x 1 daily(to protect my eyes and kidneys as insulin diabetic)senna 7.5mg x 2 daily,transtec patch 72mcg slow release every hour,oramorph 5mg x 3 daily,diazipan 30mg daily,and i feel as though i am taking no pain relief what so ever.I am extremly frustrated as i normally have such a high pain thresh hold but i am nearing the end of my breaking point now,i have not been able to sleep on a hospital bed for the last 3 yrs so i doze off and on in a computer chair often falling out of it and with everything that is going on plus other health issues i have i just do not know where to turn next,i have spoken to my doctor and she told me she was going to send me to the pain clinic and i have been waiting 7 months and today i spoke to her to find she has not even refered me as of yet,i feel so let down and reading the responses from others who have answered my question my heart goes out to you and to those who have offered to speak to me i would love to,are we allowed to give out personal email addresses on here,i am so thankful for finding this site as i am stuck indoors 24 hrs a day and most of my friends have not bothered with me only a couple and i feel blessed to have them,but the thought of having people i can talk to from here would make me so happy,please let me know if you would like to talk to me either on here or on private message,many many thanks for all of the replies and i look forward to hearing from anyone x unhappy74 x

[rebekah40]

Hi, I'm new on here and hope you don't mind my input. I believe the Royal National Orthopaedic Hospital deals with Chronic Pain Syndrome. I have the name of a Rheumatolgist who i see for other issues, but i don't know if I'm allowed to put her name on here.

[welshnut]

Hi I have CRPS and have had for 4 years, there are tests that can be done to prove crps is present, there are visual tests, the effected limb also presents in a different colour has an increase of hair in early stages and in later stages can be deformed. They also can conduct temperature tests as often the effected limb will be colder or hotter than the normal limb.

There is also often an emotional detachment and a feeling that the limb does not belong to the person in the early days this was pt down to mental issues but now is a recognised symptom. Pain levels are high and range from skin pain such as burning to muscle and bone pain.

A rheumatoligyst will probably be your first port of call with maybe a neuroligyst. Physio therapy is vital as is trying to continue use of the limb. There are trials at the moment with immune infusions and you can apply to be on them.

There are many myths surrounding CRPS and many different opinions on how best it should be treated I wish you the very best of luck and if I can be of any help please do not hesitate to contact me.

nutty

[mitziblue]

Sweetheart, what kind of symptoms are you having?

[Yorkshireste]

Hello unhappy74 I too have this bastard of a disease and I wouldn't wish it on bin laden if the tosser was still alive,I broke my ankle some years back and although the broken bone healed perfectly I would not be able to bear weight on it again,I was reading Welshnuts comment and she is quite right in what she says but oddly I lost the hair on my lower limb rather than gain it,this vile evil demonic bollocks has ruined my life my friend,I can no longer work walk or play,I'm on max Pregablin and 75mcg of Fentanyl and many others,this has turned a healthy 42yo drug free man into a drugged up waste of bastard space who is gaining a lard arse the size of a hippopotamus because I can't walk,I have no family who bother with me and the odd so called friend who asks to borrow money rather than ask if I want owt from shop,every time I get my Fentanyl patches delivered I ask myself,why not stick all five patches on my arm then go to sleep,if you have this dogshit then prepare for big changes,good luck unhappy74 all the best Steve.

[Calceolaria in reply to Yorkshireste]

Very sad post Steve. I hope you find a way through somehow.

[johnsmith in reply to Yorkshireste]

Have had any physio for the muscle shortening that accompanies broken bones.

Consultants are very good at saying the length of time something will take to heal. They don't tell the important information concerning the muscles that go into spasm and stay there. Working muscles which have gone into spasm is a painful business. There are no pills for getting muscles to work properly again. They have to be manually stretched out.

Hope this helps

[unhappy74 in reply to Yorkshireste]

Hi steve,reading what you have put about the way you are suffering my heart goes out to you and i can fully understand about you feeling like a drugged up waste as i have felt like this often,i would really like to stay in contact with you if this is ok with you just to have a catch up regular,if you would like to do this also let me know and we can sort something out,take care x unhappy74 x

[Yorkshireste in reply to unhappy74]

Yes of corse you can keep in touch unhappy74 it's like a big family on here lad,speak soon

[welshnut in reply to Yorkshireste]

Hi steve,

I have been where you are now, I am also in a chair and gained weight thanks to pregablin also lived in the brain cloud that makes daily life so hard. Do not give up, go back to pain clinic and change your meds I am balanced on oxycontin 20 mg morning 25 at night, oral morphine for breakthrough pain, pregablin but only at 100mg twice a day and tramadol again when needed with paracetamol. I take cyclezine to stop the morphine sickness. I am still in pain but can function, once I got this balance to work I asked for physio to help me stay active and I have joined some social groups so that I can escape from the house.

Good luck steve don't settle fight back xx

[Yorkshireste in reply to welshnut]

Thankyou for your kind words welshnut,very good of you.

[Yorkshireste]

Sorry unhappy74 for been so down about it,but there is no way or point of sweetening this up.

[Calceolaria]

Nobody can make you go into residential care unless you are at severe risk. Make them provide help at home for you. Even on the news today, they were still blethering about targeting care towards peoples own home environment. Stick to your guns on this.

[Kerryjess]

Hi Unhappy. So sorry to hear of the hard time you are having. My Physio thought I had CRPS and told me to ask GP to refer me to a Rheumatologist. (I had had surgery for tensynovitis where parts of the tendon sheaf had to be removed because of swelling and the a second surgery when it recurred within 7months-as the consultant said it could do!)

My Physio said he saw changes in my skin and I was experiencing pain levels which did not tie up with damage in the joints which were painful - eg ankles.

Eventually my GP referred me to a Pain Clinic and it was the dr there who said he couldn't see evidence of CPRS but diagnosed Fibro instead. I think we have to do a lot of research ourselves and keep asking questions in the hope that a) someone somewhere along the line will have answers b) Drs will get fed up and do something c) we will become persistent enough not to accept no for an answer when it comes to getting a diagnosis and proper treatment.

Unfortunately, chronic pain is hard to live with- I had back surgery 18mths ago, and while my back has been stabilised, I still have a lot of pain in my back and other joints and my mobility is dramatically decreased. I hope you get some answers in your search. Xo

[ladida]

Hi there, I have a 14 year old daughter who was diagnosed with 'central nervous system hypersensitisation' also known as CRPS a year ago. It's a bit of long story but here goes - she had an ankle injury about 7 years ago and has had recurring ankle issues ever since. She then had acute abdominal pain a year ago and had her appendix removed. It transpired that it was inflamed lymph nodes (associated with a throat infection). She therefore had the post-surgery pain together with continued discomfort from the lymph node virus followed by horrendous constipation as a result of all the pain meds! She was in excruciating pain for about 3 months, climbing the walls and screaming as if she was possessed, which was absolutely terrifying. We had umpteen visits to the hospital only to be sent home with no 'organic' reason for the pain! She was then referred to the 'psychiatric dept' which just about finished her off! They inferred that she had a mental health problem and was attention seeking! To cut a long story short, she was eventually referred to a specialist children's hospital where they diagnosed her immediately and we remained there for 3 weeks undergoing a multi-disciplinary treatment of physio, psychology and pain management. She did improve a little and it obviously helped to finally know what it was, but she still suffers with varying degrees of abdominal and head pain daily and terrible nausea and at times completely random severe pain in different parts of the body. We have tried pretty much every alternative medicine/therapy available (having suffered terrible side-effects with all the prescribed pain meds and no real benefit) with disappointing results but have recently heard about 'THE LIGHTNING PROCESS'. It is basically all about the 'mind-body connection and how we can retrain our brains! We were sceptical at first as it just sounded too good to be true and is pretty expensive but we've since met some people who have done it with miraculous results and can't recommend it highly enough. We live in New Zealand but this process was devised by an osteopath in London called Phil Parker, who still holds regular clinics. The practitioner over here had suffered herself for 10 years and was cured by him during a 3 day course. She consequently trained with him and has since set up a clinic over here and has had amazing success with all manner of disorders including chronic pain, fatigue/ME, anxiety, depression, MS, insomnia, allergies, etc. etc. have a 'google' and read and see the testimonials, they are nothing short of miracles! My daughter has finally agreed to give it a go and we are booked in for the 3 day course in August. It can't come soon enough, I just hope it works and gives her back the life she deserves. Anyone suffering with anything PLEASE check it out, it has to be worth a try. I'll let you know how we get on, everything crossed! X