is CRPS curable?

From what I'm told there's no cure yet it can go into remission and then come back I had Twp surgery on the same thing the second one I knew was different I didn't like to b touched on my arm and the pain was aweful my Dr left me like that for months and finally I got tired of the pain and went to another Dr and they told me that was I have and it been there ever since I'm thinking of getting the SCS in my back ppl who have has never had the pain and return back to normal which I'm hopeing bc there's no one in my town who have it but my Dr have done the SCS and had a great out come I wish u all the luck in the world ur not alone in this there are ppl out there who have it and some even worse so I wish u luck 

Sounds like you have really been thru it and i would like to empathise with you. CRPS is a scary diagnosis and some of the fear is because of the unknown outcome and the fact that the medical community are often ignorant of the condition and its devastating effect on those suffering it. I have had CRPS since a bunionectomy in May 2011, it took until Oct of same year to get a proper diagnosis and as you have probably realised that is actually quick but not quick enough. This is the first time i have replied to or joined in any discussion on any forum in all that time and the reason is that I wanted to let you know that whilst CRPS is I think at present classed as incurable there can be some positive change provided you get the right care. I once was like you, looking for someone who might have got thru the nightmare and i really struggled to find anyone out there who has recovered. I have not fully recovered but i am in less pain and am beginning to find enjoyment in life once more but it has been a long haul. The internet is a very useful tool for researching but it can also make you feel worse so I actually avoided alot of stuff about CRPS on it. I did find Keven Moseley-Koehler's story very helpful and read it on the days i was losing hope. I read alot of stuff by the late Dr Hooshmand and armed myself with a copy of what is available to us on the NHS as written on the NHS Choices website. In my experience you need an empathetic, interested, proactive GP, a referal to your nearest Pain Clinic and a place on a Pain Management Programme, a referal to a physiotherapist who knows about CRPS and who is aware that it will take many sessions to help you on top of giving you appropriate, gentle exercises for you to do at home. Ideally you should also have access to some Cognitive Behaviour Therapy to help you come to terms with this huge challenge in your life. I also had a referal to Orthotics as I was finding it virtually impossible to find footwear, they helpfully adapted some of my sandals. American RSD hope is a good website and The Royal College of Physicians published guidelines available to download in 2012. You dont mention how you are sleeping but I suspect it will be difficult as CRPS sufferers are unable to get restoritive sleep. A turning point for me was when I was prescribed Amitriptyline alongside Gabapentin. This enabled sleep which made the days more manageable. I know you said you dont like taking drugs (i was the same) but they are essential in  CRPS. They reduce the pain frequency to enable you to engage in physical therapy which is the key to recovering the use of your limb. I realise that might be difficult to visualise for you right now. I was once on 2700mg Gabapentin per day and now I am on 1200mg. My consultant at Pain Clinic also prescribed Lidocaine patches which I think are usually given to people with shingles but were an absolute godsend especially if you have "hot" CRPS and are suffering intense, tortuous, burning pain. The quicker you can get a care programme in motion the better your outcome will be. Try if you can to get a partner, friend, relative involved so you are not alone on this journey and to help sort stuff out on your worse days, you can reciprocate later when you have better days. I hope this post helps and I want you to know you are not alone. 

Firstly, what you are dealing with is extremely confronting, so never be too hard on yourself. I agree with everything Should be dancing has proposed. In addition, there are many extras that you can try that are having good outcomes. Graded Motor imagery, mirror box  therapy, are two that are non invasive and gentle but effective. A good physiotherapist very familiar with CRPS is  a really integral part of a good treatment plan. Go gently, resist pushing too hard you can suffer setbacks. Good Luck .

i have been on gabapentin(Nuerontin) for 5 years. after taking morphine for 6 months and not being able to function normally I stopped taking it. I have done great dealing with my crps until I had surgery on my ankle in December and it has flaired back up. las week I had a lumbar nerve block done but so far it hasn't helped the pain.i have been told by 3 doctors that had mine been caught within the the first 30 days there was a chance of recovery but there is no cure for me now. i've had to give up dancing and wearing high heels, not to mention that I can't be up on my foot for more than 30 to 45 minutes at a time. i can't wear flip flops or slip on sandals because I can't feel the one on my right foot and I will walk right out of it. I hope you find relief and a cure. 

Hi violetb. i understand how you feel about taking meds long term. i had much rather take the gabapentin as long as needed than to be on narcotics. i refuse to become an addict and I want to be able to function mentally ! I have no side affects from the gabapentin. I wish it took all the pain and burning away. Do you get the sharp, horrilble lightning like shooting pain up your leg? i hate when that happens!!! i hope you have a pain free weekend!!

Hi, I am also in the U.S. There aren't many doctors here in Texas that treat CRPS. My neurologist for my chronic migraines knows absolutely noyhing abouy it. i have gone several days without taking my gabapentin and had no side affects but no two people are alike. i completed my second day of physical therapy yesterday and I can feel a small difference. my foot is still numb, it still burns but the pain has lessened a degree. when I first got CRPS I didn't get any type of p.t. because since I couldn't work I lost my insurance. I developed dropfoot but somehow I managed to lear yo walk on it again by myself. I feel blessed to have been approved fot disability on my first try. if you don't mind me asking, how did you get CRPS?

Hello Violetb

I can only just begin to understand what you are going through, my 12yr has just been diagnosed with CRPS 4 months again, after jumping of a one foot high wall and tearing his achilles,  He is now totally wheel chair bound and un able to have thing touch his lower leg and foot.  Seeing him in pain and then having to carry out his physio and de-sensiazation breaks my heart.  He is so brave and does not complain, even though the Gabapentin  is not really helping and is on other strong pain relieve including morphine and using a TENS unit ( which costs a fortune in batteries). 

All the professionals tell him is that he will get better and in the beginning told him he would be back on his feet in 6 weeks,  this statement has had the biggest inpact on him.

We were fortunate and he was diagnosed very quickly after coming out of cast and the pain team acted within hours - spending a week in hosiptal to help me prepare.

Finding the right team is essential and the Bath Centre for pain has programmes and out patients that specialise in CRPS - might be worth mentioning them to your pain team,  I am waiting to hear if ours wil refer my son for a 3 weeks residental stay - give them a call they are extremely helpful

I was "lucky " in that my CPS was diagnoesd at 11 wks after a tibia fracture and my Physio GP OS reacted really quicky ,changing my physio programme and adding a nerve blocking drug + a TENS unit now at 7 months I finally feel that I have my life back and it is only the axful wet weather here stopping me doing more . Quote from my physio "Cps feeds pain ,avoid it if you can even if it involves taking drugs for a short while "