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Lyme and RSD or CRPS? Anyone have RSD/CRPS?

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Posted 12/18/2016 1:28 PM (GMT 0)
Hi All...I haven't posted on this site in YEARS and I apologize. Once I got into "remission," I chose to try to put all of this behind me and live a normal life. All was great until Dec 2014 when I had a botched foot surgery leading to a RSD/CRPS diagnosis this year in my right foot (type II w/nerve injury). Has anyone been diagnosed with this? I was curious because it appears to have spread to my arms, or it is flaring the Lyme. I strongly feel it is not Lyme. Curious if anyone has experience with RSD. I'll probably post in chronic pain forum too. Thanks!
Posted 12/18/2016 1:55 PM (GMT 0)
I have not been diagnosed with either of these conditions, but they describe me well. I don't use MD's though, so I don't have many official diagnoses.

Both of these conditions only describe the symptoms, not the cause. So if it's not Lyme returning, what else could it be since you had surgery on your foot, and your arms are involved? Something is causing this and it makes no sense to only treat the symptoms, if you ask me.

And no worries about not coming back here once you were in remission. While we do encourage members to come back and post about their healing experience and stick around to help answer questions when they can, we do understand the desire to just put this all behind and get back to our lives.
Posted 12/18/2016 7:05 PM (GMT 0)
PainInFl - Yes, I was convinced that's what I had...

One night I woke up with excruciating pain...ER worthy pain. shooting up my neck, across left side of back, down my arm and hand. Left arm went numb and I couldn't even lift it.

Over a couple of months, it slowly got better - diagnosis was radiculitis (from nerve root compression - even though imaging showed nothing)

But...then it got worse again...and I got other symptoms as well.

Before I was diagnosed with Lyme disease (and tested positive), I did see a Neurologist...to rule out MS and ALS...but at that point I also thought maybe it was RSD/CRPS. He just shrugged it off.

CRPS is an overreaction of the CNS after an injury/surgery.

There isn't a cure...and the best treatment to put it into remission is physical therapy - aggressive, and daily.

I now have strength and range of motion back in that arm (it resulted in frozen shoulder as well) - but still do have pain in that area...it's still my worst symptom of lyme.

For me, I believe it's either lyme or bartonella and I won't stop treating until it is better.

Are you in physical therapy?
Posted 12/18/2016 7:42 PM (GMT 0)
Syndromes arent real diagnosis', its a description of symptoms to quantify something they cant explain or treat ...

bvt has helped my pain and dystrophy. With abx and herbs
Posted 12/20/2016 3:17 AM (GMT 0)

PainInFL said...
Hi All...I haven't posted on this site in YEARS and I apologize. Once I got into "remission," I chose to try to put all of this behind me and live a normal life. All was great until Dec 2014 when I had a botched foot surgery leading to a RSD/CRPS diagnosis this year in my right foot (type II w/nerve injury). Has anyone been diagnosed with this? I was curious because it appears to have spread to my arms, or it is flaring the Lyme. I strongly feel it is not Lyme. Curious if anyone has experience with RSD. I'll probably post in chronic pain forum too. Thanks!

I'm very familiar with RSD/CRPS. My PCP thought I had it, but I did not. I had full body small fiber neuropathy.

There is a lot of cross-over between the 2 conditions. Both share burning pain and autonomic issues. CRPS populations have been found to be positive for small fiber neuropathy (via punch biopsy) as well. Have you had a bone scan or punch biopsy?

In terms of treatment - specialized PT and/or mirror therapy. Pradeep Chopra is a well-respected pain doctor, who has had success in his CRPS populations by treating with gabapentin and LDN. He has a small case study published.
Posted 12/20/2016 3:52 AM (GMT 0)
So one dx i got was pdn ..and here is definition of neuropathy "Weakness, numbness, and pain from nerve damage, usually in the hands and feet."

Lyme and bartonella is what is doing the nerve damage!
Posted 12/20/2016 7:10 AM (GMT 0)
Interesting Pradeep Chopra mentions minocycline as a possible treatment for RSD.
Posted 12/20/2016 8:25 AM (GMT 0)
Minocycline was also the drug terry wahls got walking again ..
Posted 3/25/2017 4:36 PM (GMT 0)
I have CRPS type 2. I am going on 3 years with it. Complex Regional Pain Syndrome is a real disease and a real diagnosis, and let me tell you, I will be blunt, this is a very nasty and horrific disease.

A quick rundown:
It is classed as a rare disease, 1 in 200,000 people diagnosed annually.
They have known about CRPS since the American Civil War.
They do not know exactly what causes it and it is incurable.
On the McGill Pain Index it is prated higher in pain than child birth or amputation of a finger or toe with no anesthesia.

I am at a point with my disease that we are just pain managing and I am scared as heck.
The side effects from the disease and the meds is a mile long. Mentally and physically, I am just drained.

I do not want to sound like a doomsdayer on this subject, I just want to be factual about it. I have done my due diligence on the subject and have done an extensive amount of research.

Please feel free to contact me, I promise I am a nice guy. I want to help when and where I can, and in turn it helps me by keeping my mind and body busy.
Posted 3/25/2017 5:02 PM (GMT 0)
Hi jimmyglaughlin - welcome to our community!


I can't remember the difference between Type 1 and Type 2...would you briefly explain?


Did your CRPS follow an injury...a surgery?


I'm convinced now that what I thought could be CRPS is in fact lyme and coinfections.
With treatment, I am getting rid of symptoms...slowly ...

So, do you have Lyme Disease as well...and that's why you've decided to post on this forum?

How is your pain management now?
Posted 3/25/2017 5:06 PM (GMT 0)
Hi Jim,
I can see that you don't normally post in this forum - although we sure don't mind for members of other forums posting here!! I sure hope that you didn't take offense at our postings. This is a common misdiagnosis for us is all.

We actually have Neurological Lyme and/or Bartonella that cause these same symptoms as CRPS - only ours are driven by an infectious process - and so we have treatments that actually work to stop this pain - IF doctors are aware that there are infections that cause these issues.

So for us, it's doctors ignoring the fact that we have infections - not that we don't believe that the condition is real.
Posted 3/25/2017 8:19 PM (GMT 0)
Hi, I also have a history of RSD, which is now called Complex Regional Pain Syndrome.

Onset was in 1984 after surgery to right wrist. Within 2 years it was in all 4 extremities.

You are correct, it can be horrific. The pain and suffering is brutal enough, but it can quickly wear you down emotionally .

After about 27 years of physical therapy, medicines of all kind(even fentanyl didn't touch the pain), nerve blocks, spinal implant I went into remission.

There is hope, I never would have believed I would make it through those years and have a productive life again.
I have now been in remission for 6 years.

I was scared when I got Lyme, that the RSD would come back, but so far it has not.

RSD can go to other extremities, there are also cases of it in the face. Also you can get other issues from bracing from the pain all the time.

Early on I had PT 3 times a week, which I believe was helpful in the long run. I also always tried to keep active even though I was in severe pain. Not easy for everyone, but for me fighting thru it and keeping busy helped me make it.

I the last years of it, I had a lessening of the pain, and savella and then cymbalta helped with managing the pain. Then remission, no meds for the last 6 years for RSD.


I truly hope for all of you that have this, that it goes in to remission soon.
Take care, Jo
Posted 3/25/2017 9:20 PM (GMT 0)
I was diagnosed with CRPS 2 years ago. In my right foot. Following an initial injury of I don't know what. I fell off a 2 step ladder, went to physical therapy and was doing great. Then I stepped wrong on my patio and BAM, full blown CRPS. Literally, overnight? Doctors found a 5 mm cyst in the right foot, told me I was faking the pain, and I just needed to destress. I went back to PT, got walking again, then found out I have Lyme disease. Apparently those little bugs love inflammation (which the doctors said I had no inlfammation), so, I dumped the doctors and started treating myself. My foot still flares, no rhyme or reason I can see, but I can tell you the ONLY thing that helped with that pain (I tried all kinds of painkillers, anti-inflammatory meds, muscle relaxers, all given by the docs) was medical marijuana. I use the tincture drops. When I was still on crutches and I could feel the pulsing and then the pain, I would take my drops and within 10 minutes....sweet relief. I HIGHLY suggest that if you can, to get access to medicinal marijuana, best pain killer for my "CRPS" diagnoses. I never did the nerve block after I researched treatment for CRPS, and am very glad I didnt. That's just my personal experience though.
Also, the medical MJ did NOT make me high, worth noting in case u want to know.
Posted 4/20/2019 6:05 AM (GMT 0)
I have CRPS II, and mine comes from NF1. Which is neurofibrotomis, from all the tumors on my spine. I can't do PT as it makes things worse..the pain.
It took years to get help, over 10 years as I was tossed out of so many places. As a nut case, until I had a chromosome test prove I had it on chromosome 17. Then later now this CRPS II.
Long haul, and I have gone through many pain clinics. I just have a SCS installed, the trial went well.
I am now in recovery for one week. Hoping things will turn around, and maybe I can walk some.

I am grateful now, that I never did have kids, as I found out later in my life. As with NF1, I would have never wanted to bring someone into the world with a chance of NF1, and chronic pain. 50 % chance
But life is still happening.
Posted 4/20/2019 6:42 AM (GMT 0)

Pattymeow said...
I have CRPS II, and mine comes from NF1. Which is neurofibrotomis, from all the tumors on my spine. I can't do PT as it makes things worse..the pain.
It took years to get help, over 10 years as I was tossed out of so many places. As a nut case, until I had a chromosome test prove I had it on chromosome 17. Then later now this CRPS II.
Long haul, and I have gone through many pain clinics. I just have a SCS installed, the trial went well.
I am now in recovery for one week. Hoping things will turn around, and maybe I can walk some.

I am grateful now, that I never did have kids, as I found out later in my life. As with NF1, I would have never wanted to bring someone into the world with a chance of NF1, and chronic pain. 50 % chance
But life is still happening.

Hi Pattymeow - welcome.

I’m so sorry you are suffering with pain. I hope the SCS helps with that.

If you have tumours on your spine - causing your pain - How does CRPS II play into it?
Did the CRPS cause you to have pain in other areas?

I have read several stories of RSD/CRPS going into remission - and as you see a couple of our members have gone into remission.

I hope this is the case for you too.
Posted 4/20/2019 7:31 AM (GMT 0)
Hi,

The tumors are growing along the spine, and nerve root bundles all along my spine. Also on my hips, so the tumors get wrapped up the nerves. The nerves are growing thicker -- the myelin sheath is growing at a-- which is the defect of Chromosome 17- the nerves are bundles are getting thicker, it causes extra reactions, signals being sent-- and this is surrounding some of tumors-- or it is just growing-- because if feels like it--is a protective covering that surrounds fibres. So this causes the pain..
I was getting all these nerve blocks, steroids injections-- nothing working. I was brave again, went back to MD.. explained again.. with all these people around other MDs around. My legs are burning up, here is where I have been, this what I done.. like -- oh.. long long story-- etc...he tested a few other things.. and said it is because of NF1.
I am hopeful, and I am good actress... I never let them really know.. as it is so hard to trust anyone.
I hope this SCS will work.. Maybe the SX needs to settle down. Its the new Burst SCS. It is just so hard to always going back to MD's .
Posted 4/20/2019 6:33 PM (GMT 0)
So has the pain gone beyond the area of the tumors - ie in your limbs...etc.
or is the pain level higher than should be expected for that condition?


I'm just trying to figure how it's RSD or CRPS what you're experiencing.
Posted 4/20/2019 10:47 PM (GMT 0)
Yes.. It's in my legs. Totally burning up if fire.
It will not stop.. Like someone has dumped acid on my lower legs.. And I can't get it off.
If I walk my dogs, walk on the treadmill.. They swell up get red and it makes things worse. Then they can't be touched.
So, it just constantly feels like they are on fire.
Posted 4/20/2019 10:53 PM (GMT 0)
Oh my - that sounds horrible. I’m sorry you have this.

Have you been to an RSD/CRPS specialist - or a PT that is knowledgeable and has helped others with it?
Not all PT’s know how to treat it.
Pain killers are a must when doing the PT
I just recently got a nerve pain cream compounded at the Pharmacy. One of the ingredients is ketamine and I’ve read it can be effective for RSD

Have you tried that before? (A topical pain killer - it has ketamine, Gabapentin, lidocaine plus a few more I can’t remember)
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