I have been diagnosed with CRPS and am currently taking 1,800mg/day of gabapentin to deal with my pain.
In May 2014 I had surgery on my foot after breaking all my foot metatarsals in multiple places in a car accident. After (finally) getting my many casts off I went to physical therapy and re-learned how to walk. During this time of re-gaining function, my foot never felt like a foot or like it belonged to me: it felt like my foot was wrapped in cheap bubble wrap. Since I had no idea what a foot should feel like after breaking a lot of bones, I accepted this as 'normal.' I would often tell my Physical Therapist that even though it seemed like my foot was getting better, it didn't feel like a foot, or like it 'belonged' to me.
By October 2014 I was walking pretty well and thought I could move back into my life.
One morning I woke up with a giant toothache, went to the dentist and was told I needed oral surgery. The dentist injected me with about 50 injections of novocaine and pulled my tooth. The next morning I was in insane pain. My face was spasming non-stop, my jaw was throbbing, my face was swollen and I thought I was going to loose my mind. I called the dentist and he seemed unconcerned, just told me to finish my antibiotics. The pain did not diminish. It was/is the worst thing I have ever experienced. The pain continued for over a week lasting at least 8 hours at a time, then a little respite. A week later the face pain vanished and my broken foot swelled up like a basketball, felt like I was being stabbed by hot needles and was hot enough to fry something on. After my foot surgeon refused to see me and told me there was nothing the matter with me (based on a photo!), I found a great doc who diagnosed me with CRPS and put me on gabapentin.
Sometimes the gabapentin works, sometimes it doesn't, but this drug freaks me out and I don't want to be on it for the long term. Is there any way to beat this condition? Does anyone know? It seems like the longer I am on gabapentin the more it takes to reduce my pain, and sometimes it makes it worse! I have read that it is a very hard drug to come off of.
I just wish I knew if this is a life long condition and if I am going to have to spend the rest of my life on drugs. I HATE TAKING DRUGS. I am the person who will barely take an aspirin...I see people on this forum that have been on this drug for years, so I will seem like a newbie to you guys, but honestly, I am scared.
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 .
Wow. what a great and helpful post, shouldbedancing. All good suggestions. Yeah, I have been thinking about getting some help for my mind, as my thoughts are generally the culprit in taking me down, down, down.
I also just do better knowing what is what; then I can get into acceptance instead of just being in fear all the time. Remission sounds good, though, and if I can get that far I will be very grateful.
I have been doing better with sleeping lately. I wrap really thick socks around my ankles, which keeps the sheet off my feet...for some reason this helps.
Thanks so much for your words...
Thanks so much. I have never heard of these...will definitely check out
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.
Yeah, dancing and high heels went out the window long ago. Those things seem small, but they aren't. Dancing has been my all time favorite activity. The gabapentin: I don't know what to think about it. It reduced my nerve pain to a manageable level, but the pain is still always there no matter how much I take. I am now on 3,000 mgs/day, but don't feel any different than when it was 900mg/day. Except I keep getting bizarre reactions to the gabapentin: bronchial symptoms, foggy head, and the whole left side of my body feels disconnected form my brain. Having a hard time making connections. I'll be walking and find myself unable to take another step. My muscles keep locking up and spasming. Gonna see my doc next Friday. Will see what he has to say.
I can not imagine being on a drug for 5 years. Don't think I am capable of doing that. You have the same time frame for being on your leg. Me too, I tap out around 30-45 minutes. Haven't been in anything but my nike free's for 9 months. ugh.
good luck to you, as well.
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!!
I think the gabapentin is just as bad as narcotics when coming off....that's the problem. I keep reading about people having major troubles coming off this drug! After spending about 2 months on 3,000mg/day I forgot to take my afternoon dose and felt like I was coming down with a bad flu! Took my dose and felt the flu symptoms disappear. That really freaked me out. I'd rather have pain than addiction! Yes, those shooting pains are awful and my foot still doesn't feel like a foot at all, but just a mass of variable levels of pins, needles and heat.
One of the things that's been helping me the most is working with a Feldenkrais practioner. I go to a group class called Awareness Through Movement and then I have her work on me privately (functional integration sessions) as often as I can afford. I am in the U.S., but there are probably Feldenkrais practictioners in the UK. Very helpful stuff.
Thanks for your reply.
and good luck to you
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 "
In some cases of CR PS type one there is a potential cure. It involves injecting thesural nerve of the affected limb with lidocaine and Marcaine repeated on several occasions depending on response. It is done at the talo- calcaneal notch. 3 mL of lidocaine and 2 mL of marcaine in fused slowly using a 25 gauge 1 1/2 inch needle. This infusion is done parallel to the nerve in the ankle. If you are a responder there will be a difference noted almost immediately. This improves with subsequent injections that can be done after three times a day.this will relieve pain in the affected limb as well as pain distal to the site of injection. Gabalin or pre-Gabalin should be used concomitantly four pairs Asia. Maximum doses may be required. However, pain control can potentially be achieved with the injections. Narcotics are contraindicated. As a rule the injections are done for three days. There is a pain-free holiday of anywhere from 1 to 3 weeks before the injection is repeated.each time the pain holidays are extended and to the point that injections are no longer required. The whole procedure to achieve pain-free status is about four months. There is no promise. What works for one may not work for another. The upside is that the procedure is safe and relatively painless. It is non-toxic. Good luck!
I find Nowell's reply quite depressing ,the last thing you need is to hear it might be a permanent condition. Maybe I am lucky but after 7 months I find I am getting my life back . I was knocked over by 2 labradors on a training day ,not mine ,and yes I was angry not only that the dogs were so indisiplined and allowed on the training day and two because neither owner followed up on me to my knowledge .So I was 3 months in a physio hospital with a fractured tibia and fibia.Now I walk short distances ,train my dogs in good weather,drive everywhere I want and carry out all domestic tasks .I still have physio and maybe I was lucky that I was diagnosed at 12 weeks with CPS and the physio hospital acted rapidly with a changing programme but thinking positive is essential Cps and knowing your limits also ,but do not give up hope .
After my tibia plateau fracture I contracted Cps I am now 9 months post op and find that if I ignore the pain or forget it ( retail therapy works for me !) 'I do have a TENS and a drug called Lyrica which contains pregabaline and these combined with physio seem to be working for me ,but I know I am in for a long haul .However I am convinced that I will get better .Most of us have recieved terrific injuries of one sort or the other that do take naturally a long time to heal .
DON'T BE SCARED HUNNIE,I HAVE FULL BODY CRPS,IN HANDS/FEET/HIPS/SHOULDERS/LOWER BACK,RIGHT ELBOW,AND PUBIC BONE! I HAVE BEEN BEDBOUND FOR 2 YRS IN APRIL! PLEASE TAKE HEED OF MY WORLD CLASS MESS UP'S! LOL! OK,YOU MUST KEEP OFF YOUR FOOT AS MUCH AS POSSIBLE,KEEP IT RAISED WELL ABOVE LEVEL OF YOUR HEART! I USE 3 PILLOWS UNDER CALVES,LAYING DOWN,JUST PUTTING FEET UP ON RECLINER OR STOOL,WILL NOT HELP GET SWELLING DOWN.THERE IS NO CURE FOR THIS DISEASE,BUT DAILY 500MG OF VITAMIN C WILL HELP STOP FLARE UP'S AND SPREADS.YOUR GABAPENTIN INTAKE IS NOT THAT HIGH! MAXIMUM DOSE IS 3,800MG DAILY.YES YOU WILL BE ON MEDICATIONS FOR REST OF YOUR LIFE,BUT YOU MUST REALISE YOU HAVE THE MOST PAINFUL CONDITION KNOWN TO MANKIND! YOUR SCORING UP TO 46 OUT OF 50 ON THE MCGILL PAIN SCALE MY LOVE.KNOWLEDGE IS YOUR KEY TO A BETTER QUALITY OF LIFE! STRESS MUST REMAIN LOW AT ALL COSTS.NO PROCESSED FOODS.ASK YOUR DR FOR REGULAR BONE DENSITY SCANS AS CALCIUM BUILS UP IN BLOOD OF CRPS PATIENTS,AND CN DEPOST ELSEWHERE IN BODY!ANY OPERATIONS YOU MAY HAVE YOU NEED TO UP VITAMIN C TO 1500MG! THIS WILL PREVENT SPREADS AND FLARES!.GET SUPPORT AND ASK FAMLY AND FRIENDS TO PLEASE UNDRSTAND YOUR CRPS,THERE ARE MNY FB CRPS SUPPORT GROUPS.I JOINED ONE CALLED CRPS/RSDFIGHTERS.WONDERFUL,LOVING,CARING SUPPORTIVE PEOPLE,WHOM GIVE GREAT ADVISE AND SUPPORT.THEY ANSWER YOUR WORRIES,ASAP! IF YOU NEED OUGHT,JUST SHOUT MY LOVELY.DO NOT GET TOO WORRIED AS THERE ARE TREATMENTS FOR CRPS,QUITE A FEW NOW MY SWEET.TAKE CARE MY LOVLEY.ALL THE BEST,LOVE SLEBBY33,XXXXXX
Yes, it is possible to completely relieve the symptoms of CRPS, to be restored to health, and to be made well.
CURE
1.
relieve (a person or animal) of the symptoms of a disease or condition.
"he was cured of the disease"synonyms: heal, restore to health, make well/better;
archaiccleanse
"after a long course of treatment, he was cured"
Goggle "Reversing Chronic CRPS" for more information.
Your empathic and informed advice is some of the best I have read. As a second year suffer with pains primarily in my left hand and up to may face and right foot I know. I am being prescribed peraglin instead of Gabapetine, triptanol and neurotropin. Even this is not enough most days so I will ask about the patches. Many thanks.
Sorry, right hand not left.