topic Re: Anyone have CRPS? in Wellness

Anyone have CRPS?

Lakecottage5 — Sun, 11 Jun 2017 22:59:13 GMT

Re: Anyone have CRPS?

Moonchilde — Sun, 11 Jun 2017 23:05:07 GMT

@Stormygirl

Re: Anyone have CRPS?

MKR14 — Sun, 11 Jun 2017 23:20:44 GMT

If you mean C Reactive Protein blood test yes.

Re: Anyone have CRPS?

luv-the-Q — Mon, 12 Jun 2017 00:20:10 GMT

Why not just say what it is?

COPD

ALS

COLD

IBS

ARDS

CAD

URI etc.............

The list goes on. Too many to keep up with. I don't usually know what someone is referring to unless they just say what the disease is.

Re: Anyone have CRPS?

Moonchilde — Mon, 12 Jun 2017 00:45:29 GMT

@luv-the-Q wrote:
Why not just say what it is?

COPD
ALS
COLD
IBS
ARDS
CAD
URI etc.............

The list goes on. Too many to keep up with. I don't usually know what someone is referring to unless they just say what the disease is.

It's a rare condition. If you have it, you'll know. It's extremely debilitating and incurable. Not like lots of people have it. One of the forum posters, Stormygirl23, has it. I'm presuming the OP only wants to hear from people who have it and know what it is.

http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/causes/con-20022844

Re: Anyone have CRPS?

patbz — Mon, 12 Jun 2017 01:34:02 GMT

I took it to be the "old" civil service retirement system.

Re: Anyone have CRPS?

Libby330 — Mon, 12 Jun 2017 15:08:04 GMT

My friend has the awful thing. We just back from Clearwater Fl. where he had a ketamine infusion treatment. Hoping this treatment last for a few months, because it is very expensive.

Re: Anyone have CRPS?

CelticCrafter — Mon, 12 Jun 2017 18:55:20 GMT

As in RSD?

My niece has it. It was diagnosed after she broke her foot, took a long time for her to get the diagnoses. She spent almost a whole year on bed rest, any little vibration would set off a flare.

She recently injured her knee on her other leg and it's started to show up in that leg.

There is no cure for it but she was able to put herself into remission through exercise.

Re: Anyone have CRPS?

dooBdoo — Mon, 12 Jun 2017 22:34:25 GMT

Moonchilde wrote:
@Stormygirl123

Yes. Also, @sfnative has experience with this.

Re: Anyone have CRPS?

Stormygirl — Wed, 14 Jun 2017 02:25:46 GMT

@Lakecottage5 Yes I have RSD/CRPS Type 2 for 20 plus years. Am in atrophic contracture stage and now has spread body wide. I dont know why it can be self limiting in some folks and completely debilitate others. In 2009 while in Hospice I had an implanted morphine pump installed. There is no improvement in function now and my care is pallative only. Do you have a specific question? This surgery was the cause of my CRPS...in trying to fix a leg deformity one of those pins went right thru a major nerve. Now I have major deformity. Oh well thats it in a nutshell.

Re: Anyone have CRPS?

Moonchilde — Wed, 14 Jun 2017 05:01:45 GMT

@Stormygirl - OUCH!

😻😻

Re: Anyone have CRPS?

Stormygirl — Wed, 14 Jun 2017 17:34:58 GMT

@Moonchilde Yea OUCH is right...it felt like it looked....even now I feel sick to my stomach looking at it....looked even worse when I got a nasty lil buggar in the pin track (Serretia Marsecens infection) Ughhh I dont think they even do this surgery anymore (too risky and gross/archaic) Anyway how are you doing? I hope all is going well for ya. (((Hugsssss))) xxxxxxxxxxxx Stormy

Re: Anyone have CRPS?

Moonchilde — Wed, 14 Jun 2017 17:44:10 GMT

@Stormygirl, I just tagged you in the Ketamine thread to say hi.

Things are looking up for me. My medical/dental woes are nearly over (knock wood) and I've been "lunching" happily. More otter photos yesterday and I got some beached, lazy sea lions too.

I hope you're feeling well :-)

Re: Anyone have CRPS?

Stormygirl — Wed, 14 Jun 2017 18:07:21 GMT

@Moonchilde aww am glad you are feeling better. Oh wow I wish I could have seen the sea lions!! That sounds awesome! Dental woes...ughhhh my biggest fear LOL. They dont tell ya when one gets a morphine pump that all the teeth will go bad so I feel your pain. sigh. Im ok...doing some Physical therapy to try and keep the contractures stable. Am saving up for the next ketamine infusion as it isnt covered by insurance (go figure LOL) Yes will give u my e-mail. Let me know when u get it I will then erase LOL) (yup the flower is spelled wrong but is correct LOL)

Edited to remove personal info

Re: Anyone have CRPS?

Moonchilde — Wed, 14 Jun 2017 18:06:18 GMT

@Stormygirl, got it! :-)

Re: Anyone have CRPS?

Tissyanne — Wed, 14 Jun 2017 22:21:54 GMT

Twenty years ago I fell while on a treadmill, and broke a bone in my right hand. I developed what was then called RSD, and it was terrible. My hand was swollen, red with a shiny appearance, and my arm burned up to my elbow. My Dr. sent me to a hand specialist, and he diagnosed the condition. My arm atrophied, and I was sent to a physical therapy facility. They told me that this could spread all over me. I had a nerve block, and with time, and intense therapy it finally did relent. My hand amd arm do still burn at times, with today being one of them. I do count myself blessed, because I know it could have been even more devastating.

For anyone suffering from this my heart goes out to you. It is truly horrific.

Re: Anyone have CRPS?

Lucky Duck — Wed, 14 Jun 2017 22:39:52 GMT

My daughter-in-law has had RSD for around 20 years. Hers started after an injury at work. Some days are better than others. I am praying for a cure for all who suffer from RSD.

Re: Anyone have CRPS?

dex — Thu, 15 Jun 2017 13:39:34 GMT

@Stormygirl Omg that looks scary.I don't understand why the surgeon responsible for this isn't also responsible for your treatments.Why don't you try a go fund me account to help pay for the ketamine?i read about a treatment in Italy that seems to be helping some people.I am always looking and reading trying to find something that might help you...you are such a brave person and you just never seem to complain.Just admire you.

Re: Anyone have CRPS?

sfnative — Sat, 17 Jun 2017 20:06:47 GMT

@Stormygirl wrote:
@Lakecottage5 Yes I have RSD/CRPS Type 2 for 20 plus years. Am in atrophic contracture stage and now has spread body wide. I dont know why it can be self limiting in some folks and completely debilitate others. In 2009 while in Hospice I had an implanted morphine pump installed. There is no improvement in function now and my care is pallative only. Do you have a specific question? This surgery was the cause of my CRPS...in trying to fix a leg deformity one of those pins went right thru a major nerve. Now I have major deformity. Oh well thats it in a nutshell.

@Stormygirl @Lakecottage5

Though I've been away for some weeks, this photo interested me. This does not look like a pump, but sort of looks like a rather horrible external fixation device gone bad. Is this indeed the ex fix device that was installed on you? I have rather a lot of experience in the installation of ex fix devices and was appalled to see this photo.

Also suffer from CRPS as a result from CMC Arthroplasties to both hands, with the CRPS affecting both hands, wrists and forearms, right greater than left. The disability on my right, dominant, side is quite notable and people have a hard time understanding what it is all about.

The international medical community is moving at a snail's pace to make inroads into even diagnosing CRPS properly, let alone discover effective treatments.

I'm sorry to hear you're suffering to such an all-encompassing degree and hope that some day there will be relief for you.

Re: Anyone have CRPS?

Kookielady — Sat, 17 Jun 2017 21:33:50 GMT

So sorry for your loss.