I was diagnosed with CRPS/RSD Type 1 on Thursday, I have been placed in the moderate to severe category. They are still unsure as to what caused it, possibly an injury to my neck.

I have been paralysed from the wrist down on my left arm for six months, but the pain, discolouration and sensitivity spreads are far as my elbow. During flares I am not even able to tolerate long sleeves.

I am also paralysed from the right ankle down, although the symptoms are not as severe as in my arm. I have been unable to wear proper shoes for over two months ( the only thing I am desensitised to is sheepskin) so its basically sheepskin slippers all the time. I also sleep on sheepskin at night. My toes are curled right over and my ankle turned in towards my body. I do have some movement in my ankle now though and can take some small unassisted steps. Pain and sensitivity wise things are no way better but this small amount of movement has been a great achievement.

I have tried a lot of medication. I am currently on Amitriptyline, Topamax, Naproxen, Omeprazole and paracetamol but this is in no way controlling my pain. I have tried Gabapentin, Pregabalin and Nortriptyline, none which have worked for me and I have not been able to tolerate any stronger painkillers due to sider effects (not even codeine).

I have a hand therapist who I see every week ( I am STILL waiting to see someone about my foot) but because my pain is so out of control some weeks I am in too much pain to do anything functional, so I am just sat with my arm in a bucket of cold water (I do better in this) will he does desensitisation, so progress is really slow. I am hoping to return to university next month, and would have liked to have made more progress than I have done.

My pain consultant who diagnosed me on Thursday as offered me lidocaine or ketamine infusions as the next step. I am a little nervous about this as I am so prone to side effects to medication. I also (as far as I know) have to have it done in day care, and I live a long way from the hospital, there is no where close to park to it (its right in the middle of the city) so I will have to get the train home after being pumped with the stuff for 3 hours. Basically I was just wondering what other peoples experiences are with these infusions as often I have found the side effects have far outweighed the benefits (if there was any) of the medication in the first place. If this is likely to make me feel really horrible I am tempted to ask what other options might be available to try first and maybe consider this as a later option?

Thanks xx

Hi Abigail,

I am so sorry you had to come and find us. We have a wonderful group though so you've landed in a soft place. We all know how terribly frightening and out of control it feels in the beginning. It is great you were diagnosed relatively early, that bodes well for treatment making a difference. Try not to panic. Stress and anxiety will heighten your pain response and do nothing to help you heal. There is hope. Cleveland Clinic CRPS bigwig Dr. Michael Stanton-hicks says 80% of people improve over time. There is a very helpful video by Dr. Pradeep Chopra called "CRPS Diagnosis and MAnagement." On Youtube which is rational and gives many tips on treament and therapies.

It is concerning that the cause of your CRPS is unknown. I would encourage you to pursue an answer if at all possible. Sometimes there is something that can be addressed causing it and that makes all the difference in outcome. If you need consults with other specialists or MRI imaging, etc. then go after it. No one wants to live with a problem that can be fixed.

I am currently receiving ketamine and am having good results with few side effects (nausea right after for 30 minutes, no big deal). I nap the day of and wouldnt want to ride a train though I usually stay awake for 2-3 hours afterwards. My protocol is very low dose and infused over 1-1.5 hours only every two weeks. Much less intrusive than some methods. I have a thread going where I post my doseage and the effects and cumulative effect. I hope you will find it helpful. Feel free to PM me if you like.

There may be creative ways to deal with the treatment time. If there is no one to take you, consider volunteer organizations that give ride to doctors appointments. Sometimes the larger medical centers have lodging where you could perhaps stay overnight. If you get stuck see about the centers social work staff. They can probably give you some tips.

Here is my ketamine post...
http://neurotalk.psychcentral.com/thread220186.html

Come see us for sharing and support. No matter what comes hold on to your recovery like a bulldog. Sometimes improvement is very slow in coming. After nine months on crutches I understand. Just keep plugging away while keeping yourself from flaring to the degree possible. If that means you only add activity in tiny, tiny imcrements then do it. If nothing else you are staving off more loss.

Sending hugs and healing love,

Abigail,

Please, please try to find a doctor who will prescribe low dose naltrexone for you. I started taking it a month ago and it is already helping me with movement, along with neurontin, which has diminished the electrical shocks I was having. Unfortunately, I can give you no pain relief recommendations, because I have not been given anything that has helped my pain. I am considering medical marijuana, because I have read that it helps.

Please follow Liitlepaws' advice about Doctor Chopra. He recommends LDN, which is why I decided that I had to try it for at least six months. On the plus side it has no known side effects.

Thanks LittlePaw and BioBased

I have been to see a local neurologist today and it was a waste of time. He said he was referring me to a local pain management team but my GP has already made sure that they won't see me and don't think I have CRPS (she doesn't agree that I have it but that I was before the diagnosis on Thursday)

I think I am going to phone up tomorrow and ask what other treatment options are available as I am not sure I want to try infusions straight away.

Have you had much work up on your possible neck injury? It may be worthwhile to see a spine specialist or a Physical Medicine and Rehabilitation doctor. Different disciplines often have very divergent approaches to the same problem.

It is always good to get information on all your options. I can understand not wanting to go to infusions right away. However, it looks like you have tried a lot of medication options already. If you have had adequate work up to identify another cause of your symptoms and are having so little relief or improvement then LDN or ketamine would seem like a natural progression. Dr. Pradeep Chopra recommends LDN highly and has a two case study published with pretty phenomenal results. One with significant ankle/foot curling. Stanford is currently doing a study on LDN for CRPS. The ketamine can be started low and titrated to see if you tolerate it. I react poorly to darn near everything and surprised myself doing fine on the ketamine.

One thing to keep in mind about infusions... You are not signing up for ongoing side effects like an oral medication. Ketamine washes out of the system very quickly and you are done with it. This is part of why it is so safe and used frequently for anesthesia even for children in ER settings for fracture reduction, etc. Lidocaine has greater cardiac side effects from what I recall. The published evidence for ketamine is positive for CRPS and at low doses the side effect profile negligible. You can check out studies on Pubmed. I have to say that it sounds like you have found a pretty progressive doctor if they are already offering this to you. Perhaps they have other tricks up their sleeve as well.

You can also try a short round of steroids of you haven't already. They are considered a front line treatment to reduce inflammation. A ten day course of 10mg 3x daily is the standard for acute CRPS.

No matter what you choose be sure to give it adequate time unless side effects are intolerable. LDN can take some months to work and ketamine gives a gradual cumulative improvement.

Do you have access to a pool? Many of us have had substantial benefit from swimming or even just swishing around with a buoyancy belt.

I have had an MRI of my neck when the paralysis first kicked in about 6 months ago. They found nothing wrong with it but a physiotherapist who I saw a few weeks later found that the C2 and C3 (I think?) vertebrae are completely jammed in place because the muscles are so tight, it was so bad he couldn't do anything with it. I had a whiplash injury about 2 years ago which caused this, I have had 4 lots of physiotherapy and none of them have been able to make a difference to my neck. The vertebrae are just sort of stuck there. My lower spine is also slightly twisted but they don't think this is causing any of the problems.

I hadn't heard of LDN before so I will definitely look into this too, but I don't know if that is offered here as I am in the UK on the NHS. My mum really isn't too sure about the ketamine infusions, seeing as I can't even keep codeine down, I read a really scary story about a boy who was in a coma for three days after a ketamine infusion, I know you shouldn't trust everything you read on the internet but it did put me off a bit. I think I just want to know what all the options are first. My consultant is really good, he is speaking to his old colleage who works at another hospital in the UK, and he actually wrote the UK's CRPS guidelines so he might have some alternative treatment suggestions for me

http://ldnresearchtrust.org/sites/de...%20reasons.pdf

hi abigal. i am sorry you have rsd. i have had it for almost five years and it started in my right hand and wrist after breaking it. i found a pm dr who did nerveblocks which helped a little and a neurologist who gave me prednisone for a short time to help with swelling. i also had six months of pt and now have a home exercise program of light stretches. i am not ready for a scs and accupuncture only made my rsd spread. right now my pain is managed by gabapentin and pain killers that my pm dr prescribes. if gabapentin doesnt help maybe you can ask you pm dr what he thinks of trying lyrica. i never tried lyrica but have heard of others who say it helps them. i am not a dr so i would ask him but don't give up hope. there are treatments and meds to help manage rsd pain. you just have to find the one that works for you. it takes some time before you will find the right thing to help you. but there are things that can help. you just have to find the right dr to help you. just take it a day at a time. this group is amazing and has helped me to deal with my rsd journey. sending gentle hugs your way.

Thank you for your advice

I am going to give nerve blocks a go if offered them, a few people have said they did get some relief from their nerve blocks so they can't all be a waste of time. I wouldn't be able to have acupuncture due to the sensitivity of my skin, my physio cannot even touch me sometimes without causing a lot of pain, I think sticking needles in my skin would be unbearable. I think that lyrica is a brand name for pregabalin? If so then I have tried it, it caused terrible drowsiness and did nothing for the pain unfortunately I am going to the doctors tomorrow to discuss other options though. This will be my first trip to the GP since my diagnosis so hopefully things will start to fall into place.

Thank you for your support everyone, it is much appreciated xx

Abigail~Hi! I am also new to this group and about 9 months into this diagnosis. I am also having a difficult time finding a doctor and trying to learn how to manage this illness. I often feel like I'm locked in a small room and every way I turn I run into a wall. I can't find a door and often it is very dark in here. I was referred to a new pain management doctor yesterday and will give him a try. Hope your appointment goes well and you get a sense of direction. Just wanted to introduce myself since we are both new. Mama Mac