[Theodora]

Hi everyone!

Wondering if there are others here who have overlap of other diseases since your CRPS diagnosis and what some of those are? It seems like I have overlap with so many strange things that I could start piling up diagnoses but wonder if CRPS just has a greater reach than anyone thinks possible. Curious to see if other people have long lists like me? Post either diagnosis or symptom lists if you feel like it - just trying to get a feel for how much cross over this nasty disease has.

I did not have any of them when I was diagnosed at age 23. Now age 32 I've had so many other issues I think are CRPS related.

The most devastating of all is recurrent miscarriages. I lost 4 babies last year and am now experiencing infertility. I can't blame CRPS yet - but I have an arsenal of CRPS related diseases or symptoms to go along with it. Curious what everyone else has had since their CRPS diagnosis.

[alaska49]

Every since I was diagnosed with RSD in 2008 when I was 20 I have been diagnosed with a new disease or find out one is spreading.
So it started with rsd in 08,
in 09 I was diagnosed with Postural Orthostatic Tachycardia syndrome so my heart rate and blood pressure goes up and down.

in 2010 I was diagnosed with thyroid cancer which was taken out and now have hypothyroidism the same year was diagnosed with Sarcoidosis each year it has spread from my lungs, to liver, stomach, small intestine, the nasal passages, and now thinking the colon, Sarcoidosis is an autoimmune disease where granulomas grow through out the body.

in 2011 was diagnosed with gastropresis so my stomach doesn't empty properly then found gastritis which is inflammation in the stomach.

In 2013 I was diagnosed with avascular necrosis which means Iam not getting blood flow to certain bones and they are dying so with eventually need surgery for each one. It started in the foot, then went to the femur then the other femur and ankle, found out 6 months ago its in both hips and 2 days ago found out its in both shoulders. I had the surgery for one ankle as it had collapsed, they put me in a ketamine coma for that surgery and that's how all will be handled.

Then 2 weeks ago found out my gallbladder is diseased and will eventually need to come out either when I cant handle the pain anymore or it gets infected

And now they are looking at possibly having connective tissues disease.

No one has said that rsd has caused me to get the rest of these diseases and at age 27 Iam at odds every time I go into a doctor I get bad news. I think rsd plays some part as before the rsd I was perfectly healthy I never saw a doctor now iam seeing specialists half the time or the month or am actually in the hospital. All my doctors are confused too they haven't seen a person have all the disease I have together in one body and its very hard to treat all at once.

Sam

[Russell]

Hi Thea,
Welcome!
So sorry for the reason you're here but glad you are and for what I've read.
Since you asked I have besides CRSP a condition called cerebral degenerative atrophy.
In laymen's term my cerebellum is shrinking. That's the part that controls all motor skills which causes me to be in a wheelchair.
Outside of brain surgery, which will never happen, there's no cure or knowing when the shrinking will stop.
To complicate things my CRSP is messing with the central nervous system.
Oh well! It is what it is.
I hope you find relief...

[LIT LOVE]

Unfortunately, miscarriages are very common for those of us that have had CRPS for several years. Considering many of us are on strong meds... I believe the question of the role of our immune system has been brought up in the past as well.

It's also been reported that some have actually had their CRPS go into remission or had a lessening of symptoms while pregnant.

You might want to read through Catra's posts about her journey through pregnancy and her recent delivery of a healthy baby girl. She has worked very hard at staying active and uses many alternatives to standard meds.

If having children is important to you, you might want to try detoxing and starting an intensive pt/exercise routine several months prior to trying again. And, I would not use birth control pills while waiting... Make sure you have a strong and stable support system in place in case the pregnancy causes spread (or if it comes into play for any reason over the next 18 years) since you might need extensive help with the daily feeding and watering of any potential munchkins.

[ali12]

Sorry you are dealing with all of this

Like you and a lot of others here I also have old conditions alongside RSD. I was diagnosed with Ehlers Danlos Syndrome which is a severe form of Hypermobility. The doctors said that people with EDS are more likely to develop chronic pain.

I also have Postural Orthostatic Tacharcadia (POTS) which is where my body can't regulate my blood pressure and pulse. My BP is always either through the roof or very low and I also have a very high pulse rate (It never goes under 100bpm). Due to POTS I am likely to faint.

I have Dystonia which is believed to be linked to the RSD. Its a muscle disorder and causes my left foot to rotate out to the side and is permanently locked in that position.

Scheuermann's Disease is another illness I have. Its where the vertebraes grow unevenly and are stuck together, causing severe back pain.

I have very low Vitamin D levels and have to take tablets for this.

I also had to have my gallbladder removed last year due to gallstones and it becoming infected - something else my doctor thinks is linked to the RSD, especially since i was unable to walk a few years ago.

I hope things improve for you, know that you are not alone.

[spiritscript]

Originally Posted by alaska49

Every since I was diagnosed with RSD in 2008 when I was 20 I have been diagnosed with a new disease or find out one is spreading.
So it started with rsd in 08,
in 09 I was diagnosed with Postural Orthostatic Tachycardia syndrome so my heart rate and blood pressure goes up and down.

in 2010 I was diagnosed with thyroid cancer which was taken out and now have hypothyroidism the same year was diagnosed with Sarcoidosis each year it has spread from my lungs, to liver, stomach, small intestine, the nasal passages, and now thinking the colon, Sarcoidosis is an autoimmune disease where granulomas grow through out the body.

in 2011 was diagnosed with gastropresis so my stomach doesn't empty properly then found gastritis which is inflammation in the stomach.

In 2013 I was diagnosed with avascular necrosis which means Iam not getting blood flow to certain bones and they are dying so with eventually need surgery for each one. It started in the foot, then went to the femur then the other femur and ankle, found out 6 months ago its in both hips and 2 days ago found out its in both shoulders. I had the surgery for one ankle as it had collapsed, they put me in a ketamine coma for that surgery and that's how all will be handled.

Then 2 weeks ago found out my gallbladder is diseased and will eventually need to come out either when I cant handle the pain anymore or it gets infected

And now they are looking at possibly having connective tissues disease.

No one has said that rsd has caused me to get the rest of these diseases and at age 27 Iam at odds every time I go into a doctor I get bad news. I think rsd plays some part as before the rsd I was perfectly healthy I never saw a doctor now iam seeing specialists half the time or the month or am actually in the hospital. All my doctors are confused too they haven't seen a person have all the disease I have together in one body and its very hard to treat all at once.

Sam

Yes, I have so many diagnoses that I can't believe they are NOT related to RSD!

[Theodora]

It took so long for my post to show up in the thread that I stopped checking after a week. I’m so happy to see it! And your responses too. It’s sort of what I expected to see.

My daughter was 2 when I was diagnosed with RSD. I was so happy that she could walk. She carried paperwork for me down hospital corridors while I walked with my crutches. She was so helpful through everything even while being a tiny person and now at age 11 she wants to help with the new baby if it ever happens for us.

I have been off of medications for years and work very hard to stay active because the moment that I stop being active it comes back on in full force. I only take Alpha Lipic Acid and a handful of other supplements. I started doing my own “PT” when I refused the lidocaine injections (I’m allergic) and did not want to have my spinal cord cut. When I refused both treatments I was handed a brochure on coping. I had a pity party and then started working on things. I couldn’t walk or even sit up without the RSD getting really bad, my legs needed to be elevated above my heart all the time, even potty breaks threw me into pain. I started to push with my toe on the side of the couch until it hurt less and less. Maybe 5000-9000 repetitions per day. Then I started pushing some weight on my foot and holding pressure until I could do that. Every step that I graduated from got me closer to walking. I fell the first few days of trying, the pain was worse than anything I had ever felt but every time I put weight on it while standing was closer to walking. Once I could walk it was only for short bursts but I did it every few minutes like it was my job. Eventually I could walk and then even run. The process took 8 months, 12 hours a day. I have mostly good days now with some really bad ones, especially during changes of season. If I walk less than 3 miles in a day, the RSD comes roaring back. It’s not a magical number, but seems to be the minimum. That presents an interesting problem because like some of you, I seem to have the overlap with hypermobility and a loose diagnosis of Ehler’s Danlos. I am ALWAYS over extending and getting subluxations and tears. Right now I have a big laceration on my foot. I tore my PCL 2 years ago in my knee, I broke my foot last year. I wouldn’t let them do surgery or immobilize either. I walked on torn tendons and broken bones because it hurts less than RSD. I went 9.5 miles yesterday on a foot with an open laceration because the RSD came back really bad this week. The first 4.5 miles hurt and the last 5 hurt more.

Not everything seems totally autoimmune but it all gets lumped there for me.
1. Vitiligo
2. Sjogrens
3. Bursitis – but also fluid filled cysts EVERYWHERE. Trigger finger, breast cysts, bursitis in knees and the ball of my foot. They put pressure on nerves and cause extra neuropathy.
4. Extra Neuropathy. Severe Small Nerve Fiber Neuropathy.
5. 10/10 hypermobile which causes a number of tears and my Doctor thinks was the reason I have RSD.
6. MTHFR Gene mutation (that’s new knowledge for me) – I know that’s always been there and not b/c of RSD but I’m going to check on this with B12 and folate deficiencies contributing to RSD/neuropathy pains.
7. Sub-clinical Hypothyroid though maybe Hahi’s
8. Nasty GI symptoms in the summers, all summer. Was told it was “autoimmune”. Sometimes I can link the start of it back to an allergic reaction to food but it happens every year.
9. Which gets me to the next one. TONS of allergies. Food, local anesthetics (thinking Ehler’s Danlos again here) and lots of medications and seasonal allergies.
10. Raynaud’s and horrible circulation
11. Arthritis in a ton of joints. Anywhere I have had a previous injury, so everywhere.
12. General inflammation and swollen lymph nodes hypothesized due to general inflammation.
13. Poor vitamin absorption/conversion, storage.
14. Iron Deficient Anemia
15. Heart palpitations but that’s a symptom of many of the above. My pulse and BP do go crazy with orthostatic. I haven’t looked into POTS – but I don’t know that it would matter or change anything if it was there, just think it is connected to RSD like some of you.
16. I break a lot of bones and tear a lot of things.
17. My immune system sucks. I swear someone can look at me through a window and give me something.
18. Bladder/Urinary/strep infections became frequent
19. I STOPPED having migraines for the most part. Now with fertility drugs I have had some but mostly they are gone. I’m not complaining..
20. Restless leg syndrome. It’s keeping me from ever having more than 4 hours of “sleep” no matter how long I am sleeping. See Iron Deficient Anemia.
21. Infertility and Recurrent Pregnancy Loss.

The Doctors don’t think there is risk to a baby and don’t think my issues are a very big deal. I have also heard that things clear up during pregnancy and I’m going in with a great baseline because everything is under control right now, mostly. If I flare, I take Prednisone and between the Prednisone and walking I can kick it in 3-4 weeks and keep symptoms minimal. Which means, only a lot of pain, not excruciating pain.

I feel like I am not so far off from you guys. My gallbladder has never made a peep though. Knock on wood. I feel so crazy sometimes when I have “so much” wrong with me, but I keep insisting that it is one thing to everyone. This is all the same thing with a ton of symptoms. I just don’t think it has a name yet.

For Fertility, the MTHFR mutation sheds some light and I found that out since I made my post. Fixing that will be very helpful. I also JUST found out about the anemia. Treating these could be the answer to my losses and I hope it is. If anyone else has had a successful pregnancy with these issues let me know if you faced any additional obstacles. I hope more posts come too, I think there is something there. I was healthy prior to the RSD too except for PMS and migraines.

What were everyone’s initial injuries or surgeries that caused your RSD? I fell down the stairs and broke a foot.

[Jerie]

Yes all these things are in my head. I believe RSD is a degenerative neurological disease, which causes all kinds of issues, but most doctors think it's just pain issues and med seeking. I don't waste my time in the ER anymore, I just suffer. I'll either live or die from whatever is flaring up this time. My next hospital visit for RSD is in a body bag. It's less degrading than dealing with the ER who won't do anything anyways, except take my money for doing nothing. They don't manage chronic pain and if it's related to your pain condition why waste your time, they won't even give you meds or treat your symptoms. That's why I wish it was classified as a neurological disease and not a chronic pain syndrome. It's a neurological disease that happens to also be painful.

[Theodora]

Awww, Jerie, I know your pain! And neurological disorders.

I skip lots of visits too. Not worth whatever they are going to tell me. I skip being seen for broken bones and lacerations - I know there is no help for me. It's hard to suffer like that. When they ask me why I didn't come to them for a broken bone, I tell them casting it would have made me flare and walking on broken bones hurts less than RSD flares - they don't have anything to say then. I have never tried an ER for anything RSD related, I'm typically a "late to seek care" kind of person and my pain tolerance is crazy high so I wait it out if I can and avoid being seen at all. Just because my pain tolerance is high, doesn't mean I'm not in pain all the time though. It's tough to deal with it and I get the answer often, "maybe we'll know more in 10 years". I've been hearing that answer for almost 10 now and they don't know anything new from what I can tell. Care is still not very good, but at least most people have heard of it now!

[scubaforsythe]

Oh my!! all I can say is WOW, I hope all of you find some peace and some healing!!!
Sending healing love and hugs