[Hana]

Just wondering... Does anyone with CRPS have symptoms otherwise unexplained by your docs?
It just seems to me that these must all somehow be related, and they're all inflammatory in nature. More pain again seems to be the majority byproduct.


1. As a child I had actinic keratosis and psoriasis

2 As a teenager I developed endometriosis – inflammatory in nature.
Also, RSD began shortly thereafter

3. Hypothroid,and arthritis began 10 years ago.

4 PVD and then Carotid atherosclerosis began 10 years ago...now approaching moderate

5. MTHFR deficiency

6. Polymyalgia

7. Immune Sx dificiency

8 Chemical and Food Sensitivities...

9 Surgical and treatment related worsening of conditions

10 Chronic Fatigue

Truthfully I think many of these conditions began after I had tried so many surgical and medical treatments.. but I don't know if it is CRPS specific.
Anything else? Please weigh in! Thanks!



Hana

[HeidiB]

Yes I did! I had mono as a teen was homeschooled 9th & 10th got GED mono became cronic fatigue for 2yrs also had female issues many surgerys now hav full body RSD almist 10yrs. On my phone sry for any mis spellings but when I get laptop back online can see better but wanted to drop a quick line, Ive wondered same thing if there is a connection. Feel free to email me if u wanna chat

[Brambledog]

Had glandular fever in early 20s, dx coeliac in 30s, milk intolerant simce early 30s, degenerative disc disease in lumbar and cervical spine since late 30s, arthritis mildly for few years before PFOA dx in 2011 after arthroscopy that caused CRPS. Since CRPS, have had worsening hip and back issues along with spread to L side. Now growing arrhythmia, heawdaches etc.

Def think immune system involved.

Sorry it's terse, blinking awful day, can hardly move.

Bram.

[Hana]

Originally Posted by HeidiB

Yes I did! I had mono as a teen was homeschooled 9th & 10th got GED mono became cronic fatigue for 2yrs also had female issues many surgerys now hav full body RSD almist 10yrs. On my phone sry for any mis spellings but when I get laptop back online can see better but wanted to drop a quick line, Ive wondered same thing if there is a connection. Feel free to email me if u wanna chat

Thanks Heidi,

Oh interesting you bring up Mono... yep. I had it too, and the fatigue was really bad. I didn't put it together. I think our bodies are hypersensitive to inflammatory diseases. Surgeries we know aggravate everything! Thanks for the invite! I'll be sure to take you up on it.

[Hana]

Originally Posted by Brambledog

Had glandular fever in early 20s, dx coeliac in 30s, milk intolerant simce early 30s, degenerative disc disease in lumbar and cervical spine since late 30s, arthritis mildly for few years before PFOA dx in 2011 after arthroscopy that caused CRPS. Since CRPS, have had worsening hip and back issues along with spread to L side. Now growing arrhythmia, heawdaches etc.

Def think immune system involved.

Sorry it's terse, blinking awful day, can hardly move.

Bram.

Hi Bram,

Wow. You've been through so much, and again,with so many inflammatory diseases. Once surgery or trauma happens CRPS goes nuts in most of us. I know of a lot of people with migraine issues but fortunately for me I have managed to maintain with the meds I have and I wonder if getting worn down causes immune system issues or if it's more direct than that?

No worries about being terse! That is part of CRPS for me... I wouldn't know how else to get through some of the more painful moments... CRPS is EXTREMELY terse, and I have that tone too sometimes, but it doesn't define who we are, just how it is, and it's okay...Praying for a relief for you today.

Hana

[Hana]

I just had a last thought and went to look up MTHFR....

MTHFR was recently discovered to be a cause for many many diseases and conditions related to inflammation. It is being studied but there rae simple things that can be done like take a special B vitamin. If interested check MTFR.net. Here is a list of associated conditions.

http://mthfr.net/mthfr-mutations-and...se/2011/09/07/

In 2003 the human genome project found a very common genetic mutation-- about 35% of population has it, and it is easy to identify with a simple blood test. Changing to a methylated folate can help B12 be absorbed properly. It is not normally tested for, but... if you have symptoms might be worth it. I had symptoms and my doc checked. Now I see a ND to help me with diet .

It doesn't manifest in everyone who has it... just some of us are more lucky than others. If you are interested, have the blood test ... treatment is being worked on.

MTHFR gene when working right: " Methionine is converted in your liver into SAM-e (s-adenosylmethionine), which is anti-inflammatory, supports your immune system, helps produce then breakdown of your brain chemicals serotonin, dopamine and melatonin, and is involved in the growth, repair and maintenance of your cells..."


Best to all today in the pain free quest,

Hana

[AndreadePalma]

Originally Posted by Hana

I just had a last thought and went to look up MTHFR....

MTHFR was recently discovered to be a cause for many many diseases and conditions related to inflammation. It is being studied but there rae simple things that can be done like take a special B vitamin. If interested check MTFR.net. Here is a list of associated conditions.

http://mthfr.net/mthfr-mutations-and...se/2011/09/07/

In 2003 the human genome project found a very common genetic mutation-- about 35% of population has it, and it is easy to identify with a simple blood test. Changing to a methylated folate can help B12 be absorbed properly. It is not normally tested for, but... if you have symptoms might be worth it. I had symptoms and my doc checked. Now I see a ND to help me with diet .

It doesn't manifest in everyone who has it... just some of us are more lucky than others. If you are interested, have the blood test ... treatment is being worked on.

MTHFR gene when working right: " Methionine is converted in your liver into SAM-e (s-adenosylmethionine), which is anti-inflammatory, supports your immune system, helps produce then breakdown of your brain chemicals serotonin, dopamine and melatonin, and is involved in the growth, repair and maintenance of your cells..."


Best to all today in the pain free quest,

Hana

That is very, very interesting on a whole lot of levels. Wow. Thank you.

I too had mono as a child, and scarlet fever too.

I have Reynauds.

My mother died from Lupus.

I loose blood very easily and I've had lots of blood transfusions. One year alone (2011) I had 10 transfusions.

As an adult I had a brain infection because of exposed nerves in my mouth. After the antibiotics my dentist in Peru pulled numerous nerves out of my mouth with a tweezers. Yes it hurt but it felt better very quickly.

Anyone else?

[heatherg23]

Hi, I have a long list...........

Let's see if I can remember them all. Most of them are about inflammation.

Age 7: Chicken pox. I mention that because....

Age 15: Shingles twice (1 severe breakout in 2 dif places...1 other minor breakout)

Age 16-26: Torn Disc in my back for 10 yrs. Didn't know til age 26. Had IDET surgery. Had LOTS of treatments before that didn't work. Carpal Tunnel x 2, Tennis Elbow

Early 20's: Sprained Neck thanks to Chiropractor. Pulled every muscle on the left side of my neck from front to back.

Age 27 (2003): Found out I had arthritis in every disc in my neck. Migraines because of it. Fusion Surgery followed. I was told I had the neck of a 60 year old.

Aug 2005: Got RSD and in early 2006 it spread.

Nov 2011: Severe back pain. A doctor told me it was due to all the scar tissue from 3 SCS surgeries. That's a lot of inflammation. I can't even stand up right now if I had to.

Years ago I dislocated my leg just by sleeping on it.

In the back of my mind I've always thought that something was wrong with my body. I've had 1 pain condition after another and I currently have 3. 2 are constant my neck is occasional pain. I thought maybe it had something to do with my height. I might have grown to fast. I shot up to 5ft 11 inches. Could cause joint and muscle problems.

I'll never know...................Heather

[moosey2me]

tHis is so weird...Never thought about these things until now...THanks..I had mono in my 30s,blood transvision in my 20s,arthridus in leg,pulled muscle In neck,pulled muscle in should down arm..Torn tendens in wrist..Vit.D really low...have to watch that often..Rsd down from hip to bottom of my right foot..I had a lot of spinal shots which always made me worse..Meds..and some food bother me big time..sure is weird..