CRPS Possibly Spreading Already?

Hi Howard, 

oh you are going through the mill just now.  I developed CRPS following slip in 2014 and had 3 k wires in my right wrist for distal radius.  There are lots of meds out there which apparently can help but also have side effects, it seems more gp's are now trying to get people off the meds.  I was diagnosed early too and saw pain management from early on so didn't go to my GP very much at all (thinking I was with the experts, may or may not have been the best option).  I only took codeine phosphate, tried duluxatine but it was poison to me, tried amitryptaline but that affect my memory which wasn't good for work.

Keep up with the water contrast, warm and cold buckets.  also desensitization, try with soft fabric first of all such as silk scarf and  build up from there.  try a small balloon blown up very small, I found this good for gentle exercise (I couldn't squeeze a foam ball).  Make sure you keep it warm, cold weather and pressure changes have an impact on the pain levels. I had brachial plexus block and various anaesthetic injections in my hand.  Don't give up, gentle movement will help.  I'm not free of CRPS but cope most days.  learn to pace yourself.

good luck

I am sorry you too are going through this. Everyone is different as to how we present and respond but yes it is possible to spread very quickly.

Join the RSDSA and other online support groups. Learn as much as you can about this disease as you will always know more than the doctors.

Physical therapy is important if you want to restore and maintain range of motion. Look into ketamine infusions as soon as possible as well as stellate ganglion blocks

Low Dose Naltrexone and vitamin C have helped me slow the spread.

I wish you the best as you fight this monster.

Hi Howard after reading your story i would go STRAIGHT to A+E sounds like a Serious infection in your arm i suffer with CRPS and have had infections but it is in my Leg and the Pain and Swelling is the same.I cannot Stress enough how important this is..Let me know how you get on and i can talk in detail over your CRPS as i have had it since 2005 

So sorry you are going through this, Howard...

Yes, it's not unusual with CRPS for your initially-prescribed pain medication to become inadequate to manage your symptoms over time, and whereas this is scary, not to mention painful (!), it helps to start thinking of your pain regimen as something that is not set in stone, but rather, frequently in flux.

I am a registered nurse, diagnosed with CRPS in 2017. In my case, a knee injury and surgery resulted in the eventual spread of signs and symptoms full-body.

This is pretty rare, so don't worry over much on that score...That being said, it is obviously a very good thing that you will be seeing the pain management doctors soon.

I hope for your sake that these are experienced practitioners when it comes to the treatment of CRPS, and more particularly, that they are up on the most current research regarding same.

We live in interesting times; in the last 10 years there has been more progress in sussing out the root causes of CRPS and how it affects the nervous system, etc., than in the previous century. A lot of what was done in the way of nerve blocks and other invasive procedures is gradually giving way to medications that target parts of the inflammatory/autoimmune processes that both start and maintain the signs and symptoms of CRPS, and can cause them to spread over time especially if not appropriately treated.

The history that you have provided shows that you have some inflammatory processes going on already, so as a fellow CRPS traveler, I can tell you that I have found the following to be helpful at various times:

Over the counter medications that target inflammation and/or pain, such as naproxen sodium for pain; I have to take one at bedtime or suffer extra bone and joint pain the whole next day. Also famotidine and the whole lot of histamine blockers in that family, including diphenhydramine, also a histamine (read: redness and swelling) blocker.

In addition, dextromethorphan with guaifenesin is available in the states, not sure what is available to you, but dextromethorphan works on NMDA receptors in your central nervous system to calm things down, and is also a nice adjunct pain reliever to boot. The guaifenesin works to stimulate your "rest and regenerate" portion of the autonomic nervous system, so you can get better rest as well.

Be aware that when you first take dextromethorphan, it is best not to have any plans to leave home or operate machinery heavier than your coffee maker or electric tea pot...The side effects of this medication wear off over the course of hours to days, but it can be a little bit trippy in the short run. Planning a nice nap on the sofa would be all to the good

Also for relaxation/better sleep, you can investigate melatonin tablets; these can be dissolved on the tongue or swallowed, depending on formulation.

Supplements to experiment with include extra Vitamin C, daily and especially when under extra stress such as busy day of medical appointments, etc., or feeling a cold or flu coming on. Also magnesium, calcium, Vitamin D (which research has shown CRPS patients are often short of), zinc, a good multivitamin with the whole lot of the B vitamins including B 12 and folacin.

Obviously, I am not a physician, so as I said, I offer up the above as a starting point for your own investigations into what works for you. I can't stress enough that when it comes to CRPS, though we have things in common with other patients, we all respond in our own ways to the medications and supplements, in part because we are all individuals with our own genetics and personal histories, diet, life style considerations, etc.. In a very real sense, my CRPS may or may not be YOUR CRPS.

Recent research is pointing to CRPS along with other types of inflammatory neuropathies such as fibromyalgia, for instance, as being along a continuum rather than hard and fast in terms of signs and symptoms, etc.. As I said, these are exciting times in terms of the research being done, but it also brings home that we CRPS patients must always be our own best and well-informed advocates, because unfortunately, many medical professionals are NOT well informed. Even those who work in pain management. I saw 5 practitioners (two of whom thought I was either faking or needed a psychiatrist) before I finally got the CRPS diagnosis.

Thanks for your post, above. You have come to the right place. People on this forum have been invariably supportive and informative about their own experience with CRPS...You can gain a lot of additional perspective in a short amount of time from them.

Wishing you the very best on your journey. Knowledge is power!

Sabrina

 

Hi Howard. 

Can you see a good physio while you wait to see pain management team.  I have this over 2 years. My left foot was where it started but through physio and keeping moving it and going to Whole Foods diet i am walking.  I still have pain but I walk.  My doctor said get rid of those crutches or you will loose use of leg etc. mine spread full body and face head.  Pacing is major factor now for me.   I am also getting lot of help with mental health.  I am keeping positive I will go into remission ! I won’t atop until I do   

With right hand keep using it. 

When it started on my mouth. My dentist said if u stop chewing on the left side the brain will get so used to that the second you do your teeth will be so hypersensitive you will want to rip them out. !!  

Lots of other treads on here with advice.  

Calm rest relaxing positive thinking for me is better than pain killers. I have given up on drugs. They just don’t help. I dpdond codeine helps my teeth pain. Ketamine infusions are available in USA and seem to work great.  

I have today been to see a physiotherapist who specialises in CRPS. I have been given a physio regime that includes contrast hydrotherapy and mirrortherapy. Having done the suggested exercises several times today I can report a considerable improvement in the range of movement in my hand and wrist. As is to be expected, my hand, wrist and arm are quite sore now, but no pain no gain I guess.

I'm due to see the physiotherapist again on Thursday of this week followed by weekly appointments of about an hours duration. I also have been given an appointment to see a pain specialist at my local hospital a week on Friday.

I'm definitely feeling more positive about my condition than I was and would like to thank each and everyone that has replied to this thread, it really is very much appreciated.

I know this treatment will be on going for quite some time, but I'm now more hopeful of a satisfactory outcome.

I will update this thread as and when I feel there is something to report.

Thanks and regards, Howard.