Diagnosed with CRPS (again); likely to resolve itself?
 

Three doctors, two of which are CRPS specialists have diagnosed me with CRPS. The doctor i’m currently seeing Dr. A (as i refer to him in other posts), made his diagnosis today. I told him my pain had decreased about 90% ,though in hindsight this was a bit of an exaggeration as some things such as walking and pain in the twos are 90% better, since the original trauma to the foot, but that symptoms had come, go and changed. For instance, the tingling, warmth, redness, and electric tingles in the foot weren’t present in the first couple months, but have become frequent (daily) but are relatively unpainful (1-2/10). So to re-iterate my symptoms orginal were painful walking, throbbing in the toe and how their warmth, redness, tingling, electric tingles.

Dr. A expressed their was nothing more he thought worth the risk doing at this time. That he had seen CRPS cases that resolved themselves and the patient was healed. That much of the literature focuses on the worse outcomes. He wasn’t willing to give a timeline for healing or a probability, but was hopeful that mine would resolve itself.

This optimism mirrors Dr. O, the orthopedist who first diagnosed me with CRPS and gave me a nerve block. It also correlates with the findings of a population based study (though their is some controversy surrounding this study), that there are many (maybe the majority) people diagnosed with CRPS that see resolution.

I understand that many on this forum are likely to be long time sufferers of CRPS. That many of you likely have much worse symptoms then mine. I’m hoping that if anyone has any advice concerning my history, diagnosis, treatments, diets, the doctors advice, prognosis, spreading, etc.. they would share it.

Hi HD,
After reading your post the only thing I could tell you is my own experience in thinking I was getting better. I'm not in any way dxing the situation.
I think in my case it's a matter of finding the right cocktail of meds. As long as I take them at the prescribed times and keeping my body on them I feel like maybe I'm going into some kind of remission. But as soon as I skip a dose I begin to have an increased pain level reminding me that I'm still a CRSPy person.
According to my neurologist it's exactly as I feared. I'm probably going to stay CRSPy and on meds... :(

HarryDresden, I am glad that you are doing better and I am guessing that the nerve block assisted with that. I do have to say that Dr A is mistaken. RSD/CRPS does not "resolve itself" nor can you be healed from it. If he truly believes that, then he is not well versed or trained on this condition. He was not willing to give you a timeline because that is impossible...there is none to give. There is no cure for it, although you can go into remission at any time. Remission and a cure are not the same thing. I went into remission early on, but I came out and it returned with a vengeance! I started with it in my face only (almost 24 years ago) and then a few years after coming out of remission, it started popping up in various areas after minor injuries and mirroring/spreading from there. It is now in my face, hands, feet, shoulders, left arm, left leg, right side and lady parts...and going strong and causing many other issues with internal organs.

I don't mean to sound like a Debbie Downer, but this is a well-documented fact...if it is truly RSD/CRPS there is no cure.

Wishing you the best.
Nanc

Thanks for the input Nanc. I mean this in all sincerity, could you link me to a resource that shows (and explains how the reached that consulsion) that no one is ever healed? I understand that their are many cases that spread and never resolve themselves but my doctors who have years and experence and that study I linked indicate their are many cases with some form of resolution (get better, heal). I have been steadly searching through what journals and studies and have yet to find something conclusive. Perphase I don't understand what i'm reading.

Would you mind sharing the names of your doctors? Maybe you are seeing someone who can help others on this forum?

Breaks my heart see how you had struggle and also imagine many if us going through same way.
I had recently changed dr and was not the best experience ever ,so hard to make them understand ,I had done all the treatments one if them wants to try and because he wanted so bad,y to inject my rsd affected limb without listen that is not recommended and also trying lumbar block which I had already and felt,I have to tell him I won't longer see him, I don't need a dr who wants to make money out of unnecessary treatments and get my conditions to a,worse stage,I'm already in a worse stage ,I don't need more .
I heard so much about remission and only know one person who really had remission and occasionally suffered from light pains or burning but still ok,and he also accept the fact ,rsd had no cure ,he dedicate his life to study rsd and is a great expect on the topic,sometimes we got in disagreements about control drugs,my back ground is pharmacy technician and he is a professor mayor in chemistry and study also rsd and pharmacology ,like I said ,an expert but rsd also took many years of his life's and remission is only an stage ,temporary stage ,like many mentions ,when that stage get released ,returns with cruelty and painful results .
I'm not getting better and don't feel better ,the fact to be dealing with a lots stress is my biggest trigger and I'm a wc casualty ,so I don't decides but I know what is wrong and what is right,wrong get injected on your rsd limb,wrong having surgery in rsd limb without a proper care before and after surely and lastly,know what we are dealing with ,acceptance is hard but really is , we are facing a condition with no cure for now, I will send you the professor info and you can contact him and see his researches ,hope that helps you ,I'm sure it will .hope better days and good luck,take time to make decision ,never run too fast it might be the wrong decision .take care ,Jesika .:grouphug:

2 cents
 

I'm one of the fortunate ones whose CRPS resolved (Jesika don't I count???:)). My basic advice for your particular situation (which you did a heck of a job detailing BTW) is:

1) mirror therapy coupled with ROM movement - 10 mins 5x daily. See where you are in 2 weeks and go from there.
2) massage/desensitization techniques (can be combined with mirror therapy). Actually - desensitization is not critical in your case based on the mildness of your symptoms.
3) 50/50 DMSO/vegetable glycerin applied to the area 3x daily. I made my own and can provide a link to purchase quality 100% DMSO if interested. (no monetary benefit to me lol:))
4) NAC 600mg 3x daily, or a boosted Vitamin C regimen, or grape seed extract (not sure on dosages there having not used it myself but have read studies and anecdotal evidence that it is a highly potent antioxidant.)
5) Take a look at your overall diet and limit caffeine, alcohol, and inflammatory foods. You will know which foods are inflammatory by how your foot reacts if you pay attention.
6) Take a look at your overall environment and pay attention to where the most stress arises. Seek out and establish a positive environment for yourself. Do stuff you love. Get out in nature. Play your favorite uplifiting music. Do it for you. Ironically, being selfish to heal yourself is the most selfless thing you can do. Live your life and revel in it dude.
7) Now that you know the worst that can happen having been on this forum and incessantly researching multiple studies, let it all go and allow yourself to heal up.

Jesika I would like to see the professor's research - thanks!

Your body is bio-electric HD. Google "piezoelectricity" for a fun time.

The electric tingles, if not overtly painful, may actually be symptoms of the nerves in your foot healing. I have experienced both the electric shock/shooting spasm/lightning strike level 10 out of 10 type pain, and warm electric tingles as my nerves regenerated. There was a very marked difference between the two for me.

You may be one of the lucky ones that got diagnosis and treatment early enough to have success at remission and if that's the case then I am very happy for you. If that's the case then I would keep the following things in mind (based on my own experiences):

1. Avoid immobilization. Even if it hurts...keep moving. Never push yourself to the point where the pain is too severe...but even on "bad days" try to at least do gentle stretches so you don't completely immobilize anything. Immobilization and CRPS are not a good match. If you can get any exercises from a physical therapist that you can do at home this would be helpful.

2. Avoid ice. Not everyone agrees on this but I would say the majority have experienced additional pain and (more importantly) spread as the result of using ice. Though I have CRPS through most of my body...I will not allow anyone to use ice on ANY part of my body (even those unaffected by CRPS at this time).

3. Keep a very close eye on the things that trigger your pain or make stuff worse...and then avoid those things. Sometimes it's just about learning a different WAY of doing something that will avoid triggering the pain.

4. Avoid getting yourself into any kind of bad pain cycle. If the pain gets worse...address it. If you don't have anything at home to do this with, then call your doctor right away if the pain increases. Hopefully you have something to address flare up pain that you don't take every day but that you can use as needed.

5. Try to find ways to relax and wind down. Stress is a known trigger for CRPS...so do your best to avoid that like any other triggers. It's amazing how much this can help...but it's also one of the hardest things to do when you are dealing with chronic pain. At least now you can hopefully focus on moving forward now that the diagnosis has been confirmed and that should at least be one less thing to stress about.

Best of luck to you. I agree that most of us on this forum have had this for a while and/or have more severe cases of the condition...but that doesn't mean we can't help you. I've learned so much from this forum and because of what I've learned I have been able to take my life back despite the CRPS pain I deal with each and every day. I hope you experience a full remission...but even if you do keep many of the above in mind because remission is not a cure and you still need to be careful and on alert for any signs that it might be returning.

Take care and good luck!

I love a good Catra post:) Totally agree with all of the above and forgot - the ICE thing is big!

Sorry ,memory suffering from blackouts!
 

I'm deeply sorry that I forgot to mention you,I had several a days with flares and also as you know suffer three family members losses I the past month,it was and is a hard time for me but I want to be here and get back not track and try my best to help but wasn't my Intention to,leave you out,so sorry but I'm sure you do understand ,thanks so much for the support and again ,you are also in remission but my Brain got clog just like other part on my body :D, sorry and hope to keep helping the best way possible.gentle hugs and lots,of love from Jesika .

thanks a lot for the suggestions! I'll write to later if I have any questions

No worries Jesika I've been to brainfogland myself. I know you've had a really rough patch and hope you are feeling better every minute:)

Hey Harry! What study did you link? Could you link it again so I can see it? I have not seen studies or documents per se, but it is a known fact mentioned by top docs and all of the credible RSD/CRPS resources on the web that there is no known cure. There is remission though. And to me, when you say resolving itself you mean being cured. But if you do in fact have RSD/CRPS and you get better, symptoms dissipate, then you are experiencing remission not a cure. Remission can last forever or just a month...my remission lasted several years. But in dealing with this for almost 24 years, I have never seen a proven cure, only remission.

I am not trying to argue with you about this, so please please don't take it that way.

Harry,

Please read these 2 links:
http://www.rsdhope.org/pain-index--crps-mechanism.html
http://www.rsdhope.org/how-is-crps-diagnosed.html

"What does the Doctor look for? Not all patients will have the symptoms listed below at every stage of the disease, especially early on, but the physican should be alerted to:

1.Pain that exists long after the injury has healed.
2.Pain that is out of proportion to the injury sustained (these are two hallmarks of the disease that Doctors look for).
3.Changes to the skin; color/texture, dryness, tightness, redness, skin rashes, possible sores, as well as an increase or decrease in sweating.
4.The presence of a constant chronic burning pain. While there are some cases where there is no burning pain, it is rare.
5.Spasms of the blood vessels and muscles.
6.The existence of a prior injury that could have damaged a nerve.
7.Use of casting, surgery difficulties, injury subsequent to the original incident.
8.Lastly, they need to look for symptoms that the patient might not realize are significant and need to be shared with the doctor. These are changes that occur in the limbic system that cause:
• short-term memory loss
• difficulty concentrating
• insomnia
• difficulty finding the right word when speaking
• sensitivity to sound, vibration, smell, barometric pressure changes, and touch
• depression"

Because CRPS is devastating, and because prompt and aggressive treatment is the best chance for remission, it has been questioned whether docs are over diagnosing CRPS. I remember coming across something claiming JHU claiming 70% of patients were misdiagnosed. (We've had posters a few years ago here on NT that felt their diagnoses were unfairly questioned at John Hopkins Pain Clinic and they went on to receive better care with Schwartzman though, so...)

The most important diagnostic criteria for diagnosing CRPS seems to consistently been severe, continual pain out of proportion to/or without any injury. Without that, I don't believe any reputable CRPS specialist will diagnose you as having the syndrome. You can absolutely have some type of neuropathic issue that is serious and needs urgent attention, but it isn't likely to be CRPS.

Thanks Lit Love,

My understanding is that what is meant by CRPS and how to diagnosis it seem to be evolving targets.*1 In general the medical community prefers to be more sensitive than specific, that is, they would rather diagnosis people that don’t have it then miss people that do. Additional, much of the literature I have read has purposed that their are those diagnosed with CRPS see resolution.*2.

My hope is that i have been mis-diagnosed, in so far as the diagnosis makes sense given the “criteria” but pathologically i don’t have either the more sever form of it or that that i have some sub-type.

*1 Proposed New Diagnostic Criteria for Complex Regional Pain Syndrome
Authors

R. Norman Harden MD,
Stephen Bruehl PhD,
Michael Stanton-Hicks MB, BS, DMSc, FRCA, ABPM,
Peter R. Wilson MB, BS

*2 The Outcome of Complex Regional Pain Syndrome Type 1: A Systematic Review
Debbie J. Bean,* ,y Malcolm H. Johnson,* ,y and Robert R. Kydd*

Hi Nanc,

I didn't think you were argueing. I don't have nearly enough knoweldge to argue. The best I can hope to do is ask questions and link to other sources that might be related to questions. The study i tried to link was

"Complex regional pain syndrome type I: incidence and prevalence in Olmsted county, a population-based study.
Sandroni P1, Benrud-Larson LM, McClelland RL, Low PA.".

I couldn't find a free version online. However, I would reccomend you read:

The Outcome of Complex Regional Pain Syndrome Type 1:
A Systematic Review
Debbie J. Bean,* ,y Malcolm H. Johnson,* ,y and Robert R. Kydd*


Which i did find online for free. Though, this review focuses on outcomes and not "cures", and largely seems to highlight that high variablity of CRPS.

Adding another link to learn more , www.rsds.org and hope you get as much info you need to learn how to,deal and to understand what's going on with your body ,best wishes and keep hope and faith at your side , gentle hugs ,Jesika .:grouphug: