Hello all and God Bless Us: New to posting so forgive for any blunders.
Just diagnosed and seeking help. In May 2016 had rotator cuff surgery and although knew one of worst rehabs, quickly knew after four weeks pain and stiffness were outside the norm. I was doing my twice weekly PT and exercises at home but started developing a very cold hand and pain and burning at the joint in back of my shoulder and a swollen hand/fingers/wrist. Five months plus later my PT is still working with me because my range of motion is not what it should be; he does not know when I can be released.

Background: At six weeks I complained to my surgeon and response was simply to move my arm more. I persisted and researched and asked about CRPS and was told maybe but didn't think so. My PT thought I had a lymphedema like condition but not lymphedema. Then my surgeon had me have an MRI of my wrist which showed an ECU dislocation with subsheath tear which he later said I didn't have (I had never done anything to cause this). I went to a second surgeon who said I either had CRPS or a cervical issue and to not worry for now about the wrist. Of course this was all very confusing. I went to a Pain Center two weeks ago and the P.A. says I have CRPS but they don't have much experience with it and wants me to have a ganglion stellate block and go on gabapentin. I am hesitant because of all the research I have done which doesn't show the blocks work for long and an expert (Dr. Pradeep Chopra) doesn't do them anymore. Gabapentin has so many common side effects which I already have without meds like lightheadedness and swelling. Dr. Chopra is in RI and I am in MD. Check him out on the internet - awesome YouTube Videos and he and Dr. Getson out of NJ are very knowledgeable). Tried to see Dr. Getson but such a backlog till maybe March 2017 or so can't wait.

This has been a very painful frustrating journey as you all know - I cry everyday because it is so difficult to find a doctor who knows much and is willing to individualize care and spend time with you. I am to visit the pain center again this week for more explanation (and probably more confusion) Will stay in touch. Does anyone know what definitely works - would love suggestions? One thing is to keep moving - which I am doing although painful. Have also contacted a mental health professional to try to keep me going and not totally despairing. I also soak my hand in epson salt which relaxes it a bit and have been changing my diet to avoid inflammatory foods but this has only been a couple of weeks so the verdict is out.

Just posted as new under Complex Regional Pain Syndrome.

Just diagnosed two weeks ago after rotator cuff surgery back in May. It has been a hellish journey and still no treatment just living through the pain and stiffness and swelling throughout my whole arm and hand. No clots; have been tested and no pinched nerves. Difficult because cuff surgery takes up to a year to heal by itself and now I have this too. I have kept moving though the pain which I know is important, and am still in PT and still searching for the right doc. I am seeing a pain specialist but am hesitant for a ganglion stellate block and gabapentin but admittedly they say they have not treated many (I live near Annapolis, MD). I research everyday and see so much stuff - all I know is I need to be treated soon.

Good finding someone to talk with. Sometimes I think we know more than the docs. Please see my other post.

If you have a PT that is willing to go over the pain limit. Personally, I don't believe in that, and I've always been told it was a bad thing, so it's always been important to exercise well within the pain limit. Now your pain sensation can be decreased with meds, so therefore (under normal circumstances), you should be able to exercise better. But you'll have to talk to your PT & doctor.

I myself am on Neurontin (gabapentin) and it works well on my pain (I still have chronic non relenting CRPS, though). I was icy cold with it (like constant frost bite in both legs). That sensation has gone for the most part - of course this type of pain is very persistent and I experience breakthrough pain every day (for which I have sublingual buprenorphin, next to pain patches with the same medicine). I would give the gabapentin a try. You can't knock it until you try it. It has helped me with my pain *hugely*!

I'm sure they are willing to learn along with you. Have some faith. Be well!

I am so sorry to hear what you are going through. In answer to your question about what definitely works...there is nothing that seems to work for EVERYONE in every situation...it's part of what makes treating this condition so hard. Blocks have been very successful for many people...especially in the early stages of the condition but also many get relief from them later. I was not one of those people who got relief from it...but I wouldn't count that treatment option out. Medications are such a personal choice...I have not gotten enough relief from any one med to feel it was worth staying on them and was off of everything for a long time until recently when they put me back on Lyrica...not sure how much it is helping and want to get off of it hopefully after I get the DRG stimulation implant.

I guess the one common theme though that does impact everyone is to keep moving the affected area. Immobilization will make it worse...so even if it's just a little bit every day or every few hours...try to move it and do some of those physical therapy exercise. Many find aqua therapy very helpful.

Many also find heat therapy very helpful. I take hot baths with Epsom salts, use heat patches, and also do ultrasound heat therapy. NO ICE! Ice is bad news for CRPS...can make it much worse. My pain goes through the roof if anything cold touches me...instantly to a 10 on the pain scale.

When my CRPS was in only one location I found using a TENS unit provided me a lot of relief. Try it out at physical therapy with heat and if it helps maybe they can get you a small unit you can wear during the day.

It really is important to get to a good doctor who has experience with CRPS. They don't have to be the top specialists in the country...but you do want to find someone with experience who can offer you different treatment options and help you decide what is the best treatment option for you.

Keep us posted on how you are doing and with any questions you have. There is a lot of experience on this site and we've all been through a variety of treatments and had different experiences so we can give you lots of things to look into and try. And also just offer support...because this is such a hard thing to go through and as much as family and friends might empathize and support you...they don't know what it is like to go through this. We're here for you.

Hello and welcome Gail. I am sorry you had to come join us but it is a soft place to land. We understand what you're going through. You are not alone.

I agree with the recommendation to keep moving and to do so without causing flare. Improvement WILL come, it can be slow and sometimes requires pulling back and starting up again but it will come. 80% of people with CRPS show improvement over time according to Dr. Stanton-Hicks of Cleveland Clinic.

Catra is right, no one thing works for everyone but there are many options to try. I receive ketamine infusions and they have been of tremendous help. I did not start those though until I hit a wall as far as progress. Gabapentin was helpful and is a standard therapy. Unfortunately for me it dampened my mood and I switched to low dose nortriptyline (and old antidepressant used for nerve pain) with good effect. Getting something on board that will calm nerve signals and alter the way your brain perceives pain could be helpful for you.

Since you are still not too far out your doctor might consider a round of oral steroids. 10mg 3x a day for 10 days is recommended by Stanton-Hicks as a frontline therapy.

It sounds like you have found some great resources with Dr. Chopra. Many of us recommend his videos. You are doing the right things. Seeing a therapist will be a big help. I worked with one who specialized in pain and she really was a life saver. Depression and anxiety can go hand in hand with pain and it is important to address both as they do affect one another. I am not surprised that you are having a rough time emotionally. It is a loss finding out you have CRPS and can be very frightening, especially in the beginning. I'm sure we've all shed our share of tears. But know that there is hope and you will get through this. It will not always feel like it does now.

Aqua therapy is great, as is mirror therapy. Altering your diet was a smart move. You might also consider checking your Vit D level. It is commonly low (even in Texans like me) and is implicated in chronic pain.

Let us know what happens. Keep looking for a doctor until you find one you are comfortable with. Good ones can be one of the greatest allies in the fight against pain.

Sending thoughts of healing and comfort,

The previous posters already gave you good advice and information. I agree that it is important to keep moving with the PT and a PT home program. It is important to find the proper balance for you. Too much or too vigorous can just make it worse. Moist heat, TENS, gentle stretching, and desensitization helped me get through the PT. I am sensitive to many drugs, but I will give them a chance.

There are a variety of treatments available. I travel to Philadelphia, PA for ketamine infusions every three months. Since you were already told that your group does not have much experience with CRPS, ask them for the names of doctors, universities, clinics or hospitals that do.

In the meantime keep doing your research and know that there is hope.


Shay

Thank you all for your replies. I went Friday to my pain clinic and came away with some tears. The doctor said he could only offer gabapentin and after telling me about a ganglion stellate block he had given to a woman who did not do well with it and was actually set back several months with her pain - he was not recommending giving it to me. But he would do it if I wanted - if that wasn't confusing? He wasn't into "experimental drugs" and wouldn't even look at literature I had brought with him on LDN. Really frustrating when the pain clinics say they treat CRPS but then within a narrow range of treatment (nerve block and gabapentin only). I had already decided again the blocks at this time, but thought he might be more open minded towards alternative drugs like LDN. My big problem is waiting till December when I see Dr. Chopra in RI. That visit will be an extreme expense for me....I am going to try Aqua Therapy next in the interim. I am also going to beg if I need to my GP to prescribe DMSO 50 percent for use on my hand which is swollen, stiff and painful. What type of doctors are prescribing your meds for you? Anyone have good experience with mirror therapy?

[Forgot to mention - my vitamin D levels were insufficient and my GP started me on 4800 IUs about two months ago. Haven't had a retest but I do have more energy. 4800 seems high but I did read that CRPS suffers do have a tendency for low levels. I was taking 2800 IU a day but not enough. Also have osteopenia (just tested). My GP would like me to get most calcium from foods with high levels rather than taking vitamins - also take walks. Walks are hard because I am so lightheaded and never know when this will spike. I have incorporated into my diet more leafy vegetables and fruits and NO breads, and sugars. I look for anything non inflammatory including tumeric. I have lost six pounds in just a few weeks which I am happy about too. Also drinking lots of water which I have to force myself to do.

Just unhappy always having such stiffness, swelling and pain. My mood is much better in the a.m. so I try to get things done and know that towards evening I will be much worse. Thank God for my husband who is trying to understand and help the best he can.

Hi Gail,

LDN is not anywhere near commonplace yet. I am not surprised your doctor doesn't prescribe it. My doctor, who gives ketamine and seems progressive, wasn't interested in pursuing it when I asked about a year ago. Stanford is currently doing a study on it and I'm hoping for our sake that a recommendation will come out when they have results.

Until then, gabapentin or something like low dose nortriptyline could make you more comfortable until you see Dr. Chopra. That is not a bad thing. Keeping your pain down is important in fighting this. Titrating the dose of new drugs helps prevent side effects. I usually start at half dose. You could also try gabapentin only at night which is what I did when I took it. And Nortriptyline (was prescribed by neurology but PM was also willing) is a once a day take at night kind of pill. Either can treat pain and also help you rest better.

I felt that mirror therapy was helpful and did it several times a day. DMSO is available online without a prescription. It is often a higher concentration than used for our purpose. I found aloe vera gel to be a good substance to dilute it with. You might also consider PEA Pure or palmotoylethanolamide (which I just saw is also now produced in the US under a different brand name). It attenuates glial activity and is recommended for neuropathic pain.

Hang in there. December is getting closer everyday!

Don't feel down. Gabapentin is a *lot*! Give it a fair chance.

How do you actually *know* for sure that LDN is going to be better for you. You can't know until you give it all a fair chance.

Neurontin is truly life-saving in my case! I don't know what else I would have done, being in so much pain.

I feel that you just are writing off things without giving them a fair go, because you have your mind set on something, all while LDN might even be no good for you.