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.