Complex Regional Pain Syndrome / RSD and Microglial Inhibitors

cherubim

Well-Known Member
Hi everyone. I had fibromyalgia and got better after reading of Montoya's work. I convinced my doc to put me on Valcyte. The 2nd thing I believe helped was S-acetyl-glutathione. I took a lot of supplements and got healthy again.

Then I underwent surgery and developed RSD / CRPS

I'm wondering if there is a link to fibromyalgia, because I came across it a few times. I cannot convey just how bad the burning is. I was wondering if anyone here developed this disorder? I read Cort's article on glial cell activation - I've never even heard of glial cells. Now I'm rushing to do a crash course in biology to try to beat the clock because CRPS gets dangerous.

Does anyone know what to take to stop glial cell activation?
 

Who Me?

Well-Known Member
Hi, What is RSD/CRPS? you might want to spell it out in the title so people know what your talking about.

You can edit your title on the top right of your post. Edit Thread, then edit title.
 

cherubim

Well-Known Member
Sorry - I didn't realize - it is Complex Regional Pain Syndrome. It is when someone has surgery, or even a minor injury, and the body reacts too strongly. You begin sweating, losing control of your muscle movements, and the area of the body you have it in swells, turns hypoxic, and burns like crazy.

There is suspected glial cells involved - but I don't know if that's the answer. There are many theories. That's why I thought I'd check to see if anyone had it who had/ has fibro.

It is very frightening.
 

Who Me?

Well-Known Member
Thanks for explaining. Sounds horrible. You still might want to write it out in the title of the thread. Many here with cog issues
 

cherubim

Well-Known Member
OMG - yes ! I would NEVER recommend ketamine to ANYONE and I feel sorry they use it on animals. It was used on the street, and I guess I had a bad 'trip' (I don't know I never used drugs). It was horrible - you hallucinate and when I opened my eyes I thought I was hanging upside down. It made me nauseous for weeks afterwards and gave me a pounding headache. It did nothing for the pain. That stuff is like injecting poison into the veins IMO.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
CRPS is one of the most painful disorders known. It can be a very difficult disease and I'm sorry that you're dealing with it. Some researchers think there are links to fibromyalgia; clearly both the immune system and the autonomic nervous systems are involved.

Here's a blog on the possible intersections between FM and CRPS - Fibromyalgia and Complex Regional Pain Syndrome: the Neurogenic Inflammation Connection

I'm going to have put out a blog shortly about a young man who did very well at the Mayo Clinic POTS program but they also take CRPS patients. The parent who told me about him provided this as well about a women who was told she was probably going to have her leg amputated - that's how bad CRPS can get. She apparently did very well at this program. I haven't seen it yet but I suspect one of the things she did was exercise it quite a bit.
  • Success story with Complex Regional Pain Syndrome - “Courtney’s Story - Mayo Clinic Pediatric Pain Rehabilitation Center” - https://www.youtube.com/watch?v=IKngXdH2f2Y (6:21 min)
    • Note: before arriving at the Mayo PPRC, this young girl, Courtney Cassidy, was told by two specialists that the only solution for her leg pain was amputation (her nurse Dan gave us several of our lectures & told us about her). This is her PPRC success story with Complex Regional Pain Syndrome.
 
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cherubim

Well-Known Member
Thanks Cort. The link didn't work?

I know amputation is sometimes done - that is why I am trying so hard to find quick answers. I cannot tell you how much pain I am in as I type this. I will check out the Mayo Clinic Program. I was looking at a top hospital's program for it, but it's the standard things that just don't really work.

You are in a unique position due to having researched these disorders, and have probably done more research than most doctors. In your best judgment, if you were in my place, what supplements would you take, and what meds would you ask your doc to prescribe? I printed your paper on glial cells and brought it to my doc and he gave me minocycline. I took it 3 days and it hasn't worked yet.

Substance P is involved as well. There is even a link to PTSD. There has to be a common thread there.

I'm in pretty bad shape and am desperate. I would sincerely appreciate any suggestions.


*To Who Me: sorry, tried to change the title but couldn't figure out. Burning pretty bad.
 

cherubim

Well-Known Member
Wow - just what I was looking for! I knew my instincts were right to look for info here. Thanks Cort. God is going to bless you.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks Cort. The link didn't work?

I know amputation is sometimes done - that is why I am trying so hard to find quick answers. I cannot tell you how much pain I am in as I type this. I will check out the Mayo Clinic Program. I was looking at a top hospital's program for it, but it's the standard things that just don't really work.

You are in a unique position due to having researched these disorders, and have probably done more research than most doctors. In your best judgment, if you were in my place, what supplements would you take, and what meds would you ask your doc to prescribe? I printed your paper on glial cells and brought it to my doc and he gave me minocycline. I took it 3 days and it hasn't worked yet.

Substance P is involved as well. There is even a link to PTSD. There has to be a common thread there.

I'm in pretty bad shape and am desperate. I would sincerely appreciate any suggestions.


*To Who Me: sorry, tried to change the title but couldn't figure out. Burning pretty bad.
I changed the title....

Boy - I will have to look at microglial inhibitors again. I'll see if there's are good review paper out there that helps to make sense of that long list.

Always with pain I think of medical marijuana (MM) and low dose naltrexone. Surveys suggest MM may be much, much better at treating pain in FM (and hopefully CRPS) than the FDA approved drugs and opioids.

Vagus Nerve

I would also look into getting the vagus nerve working again. The sympathetic nervous system is involved - to what extent no one knows - but it could only help to get the parasympathetic nervous system working better - cooling down the flight/ flight system and hopefully cooling down the immune response as well.

There are lots of ways to do that and putting those together in a blog is something else I mean to do.

Here's a CRPS patient who improved on spinal cord stimulation - I don't know if its the vagus nerve or not - http://www.neuromodulation.com/pain-patient-aided-by-spinal-cord-stimulation
 

cherubim

Well-Known Member
Thanks. I did try the MM but it didn't agree with me. I tried hemp hearts one time and was allergic to them, so I guess it's all the same family. I may give it a try again. I saw the LDN has had some success. The problem I am having is I am in so much pain I am on painkillers and you have to go off them to do the LDN. I don't think I can do that - I'm too afraid of being unable to handle it. CRPS exceeds all pain scales. I've been trying to cut down on my painkillers - I'm only prescribed 3 a day - but it comes down to choose your poison: use painkillers but activate glial cells or don't use painkillers and shoot your cortisol levels through the roof. (painkillers activate glial cells / pain shoots cortisol into the blood). It's a no-win.

I was offered the spinal-cord stimulator. I read it's contraindicated in CRPS. I don't like the thought of anything being done near my spinal cord. I watched Dr. Oz and he had people who were given epidurals who then became paralyzed.

I am very surprised that as bad as this disorder is, no one has come up with a solid treatment. I also want to warn anyone who has had Fibro in their life, to use caution after surgery as there has been some speculation that there may be a connection. In Holland, I believe, post-surgery patients are prescribed vitamin C.

How do you get the vagus nerve working? I know the sympathetic nervous system is involved - I am experiencing episodic sweating, and body jerking. Do you know how to cool down the flight / fight system and immune?
 

cherubim

Well-Known Member
Cort - I want to thank you for your link to glial cell inhibitors. I printed it and am bringing it to my doctor today.

My CRPS was initiated by nerve damage. But in my research, I came across a link to fibromyalgia, so I'm looking at all possibilities. There are so many difficult-to-understand journals to slog through.

I did wonder if anyone has tried minocycline for fibromyalgia or related disorders. They've been able to cure arthritis using it: http://www.roadback.org/resources/recommended-reading-viewing/

I am going to research vagus nerve also, as well as cooling the flight/ fight system. It's interesting that you mentioned immune system - some patients have done well with IVIG.

I again want to express my appreciation Cort. I hope eventually you can expand your site to include more disorders. You are able to research, and then condense what you have learned into easy-to-understand articles. That's a gift.
 

Remy

Administrator
Hi everyone. I had fibromyalgia and got better after reading of Montoya's work. I convinced my doc to put me on Valcyte. The 2nd thing I believe helped was S-acetyl-glutathione. I took a lot of supplements and got healthy again.

Then I underwent surgery and developed RSD / CRPS

I'm wondering if there is a link to fibromyalgia, because I came across it a few times. I cannot convey just how bad the burning is. I was wondering if anyone here developed this disorder? I read Cort's article on glial cell activation - I've never even heard of glial cells. Now I'm rushing to do a crash course in biology to try to beat the clock because CRPS gets dangerous.

Does anyone know what to take to stop glial cell activation?
Have you thought about IVIG?

From Immunoglobulin G for the Treatment of Chronic Pain: Report of an Expert Workshop

CRPS
Treatment of long-standing CRPS is empirical and often of limited efficacy [33]. Preliminary data suggest that the immune system is involved in sustaining this condition [34], perhaps through an autoimmune mechanism [7,35], and that treatment with low-dose IVIg may substantially reduce pain in some patients. An open trial of repeated low-dose treatment (usually 36 g equal approximately to 0.5 g/kg) in 11 patients was first performed, where 3/11 patients experienced >70% pain relief after repeated treat- ments and 6/11 patients had no benefit [30]. A subse- quent crossover RCT in 13 CRPS patients, who were treated with IVIg (0.25 g/kg/day for 2 days) and saline [36] was positive. The average pain intensity 4–19 days after IVIg treatment was 1.55 units lower than after saline, and in three patients, pain intensity after IVIg was reduced by >50% more than after saline. Median onset of pain reduc- tion and median time to maximal effect were 2 and 5 days, respectively (Table 1). The duration of the effect was vari- able, but pain returned to baseline by 3 months in all patients. No serious adverse reactions were reported. A larger RCT is currently being conducted aiming to confirm these findings [37]. In a follow-on study, three patients (disease duration >5 years) with >30% pain relief in the RCT received openly first a single dose of either 1 or 0.5 g/kg IVIg, and if they had >30% pain relief, they con- tinued receiving SCIg in weekly home applications through a small pump. Two of these three participants experienced profound and sustained pain reduction during their 3–12 months of maintenance SCIg treatment; the 1 g/kg doses were not more effective than the 0.5 g/kg doses in the earlier RCT. Both patients remained in remission at 12 months after treatment stop [38]. It should be noted that induction of long-lasting remission was unexpected and had not previously been observed. In earlier studies, patients had been scheduled for repeat treatment only when their pain had became unbearable, usually every 6–12 weeks, and plasma-IgG levels would be assumed to have repeatedly returned to baseline, although this was not measured; in contrast, in this latter study, a higher IVIg trough concentration may have been maintained. It is possible that maintenance of higher IgG-plasma levels over several months induces disease remission in CRPS, as is known in some other IVIg-responsive conditions [39]; however, studies in larger groups would be required both to confidently confirm these clinical results and to clarify trough levels. There is currently no published evidence suggesting a better efficacy for high-dose as compared with low-dose IgG treatment. Use of a Liverpool protocol for future treatments is suggested: patients should first be treated with an intravenous loading dose of 0.5 g/kg; if >40% pain relief is achieved, patients should— commencing 2 weeks after the loading dose—be offered a trial of 6–12 months of low-dose maintenance treat- ment; this could be either 0.5 g/kg/month divided into weekly portions (or even smaller portions if a “push- technique” is used instead of a pump) for subcutaneous therapy, or 0.5 g/kg every 3 weeks intravenously; after 3–6 months an attempt should be made to halve these doses, and after 6–12 months to stop treatment.
Also, this study showed efficacy of IVIG against CRPS.

Intravenous immunoglobulin treatment of the complex regional pain syndrome: a randomized trial.
 

cherubim

Well-Known Member
Yes I have - thank you. I don't know where you would get it done. I've been pretty much just surviving and researching- - but so are all of you probably. In the meantime I ordered Swanson's Ige and am taking that - I don't know if there is any similarity - just a guess on my part. A lot of doctors don't know how to deal with it. It is one monster to deal with. I would strongly recommend that anyone who undergoes surgery take vitamin C throughout and afterwards - standard practice in some countries to prevent this. I'm doing multiple therapies, and was able to bring some of the intense burning down. It spread before it was diagnosed unfortunately. I've felt like giving up many times. I have faith in God and what purpose He has in it - but researching every possible cure.
 

Remy

Administrator
Yes I have - thank you. I don't know where you would get it done. I've been pretty much just surviving and researching- - but so are all of you probably. In the meantime I ordered Swanson's Ige and am taking that - I don't know if there is any similarity - just a guess on my part. A lot of doctors don't know how to deal with it. It is one monster to deal with. I would strongly recommend that anyone who undergoes surgery take vitamin C throughout and afterwards - standard practice in some countries to prevent this. I'm doing multiple therapies, and was able to bring some of the intense burning down. It spread before it was diagnosed unfortunately. I've felt like giving up many times. I have faith in God and what purpose He has in it - but researching every possible cure.
You can get it done at any hospital or a hospital infusion center. It's readily available. Most insurance will even cover in home IVIG now.
 

cherubim

Well-Known Member
Really? I wonder if I go to the ER if they'll give me it? I've had reluctance from my family doctor and pain specialist to try things - my doctor told me to go to a teaching hospital. I wonder if I would need a doctor to order it.
 

Remy

Administrator
Really? I wonder if I go to the ER if they'll give me it? I've had reluctance from my family doctor and pain specialist to try things - my doctor told me to go to a teaching hospital. I wonder if I would need a doctor to order it.
They will not give it at an ER. Your neurologist can order it.
 

cherubim

Well-Known Member
Thank you for that bit of info. I don't have a neurologist, so now I'll have to find one. It's overwhelming. I'll get my 2nd wind at some point.
 

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