Before RSD I was really healthy but once the RSD went full body it seems like my whole body is falling apart with e RSD, I ended up with thyroid cancer, then gastrparsis. Then sarcoidosis to the lungs liver and stomach, then my hearing is starting to go and now have been diagnosed with avascular nacrosis where blood flow doesnt get to the bone and the start dieing and my ankle is going quick my hip and knees arent so bad just scare I will need bone grafta and knee and hip replacements at 26 years old. The onlything else if just for my head to fall off lol...

Samantha

Hi Samantha

That is one brave little 'lol' at the end of your post... I find it hard enough at 40+ to deal with this disease - I'm not surprised you are scared of the future when so much has happened at such a young age. It's not fair. That's a massive understatement though, because it completely massively sucks. BUT you are obviously a fighter, and you will still have a life despite what this condition does to you.

I hope your bone problem doesn't make things too much worse, and that you can put off any surgery for as long as possible. Are you taking the Vitamin C daily? It's no cure (we wish it was tho!) but helps to prevent spread and strengthen your immune system. Have you looked over your diet? I'm sure you eat healthily anyway, but make sure you are getting enough vitamin D, etc. Magnesium is also really important and is absorbed well through the skin via the good ole Epsom salts

I've got to dash as my husband has just got back and we have about a million OMG last-minute Christmas things to sort out... But take care of yourself and I hope you have a better day.

Bram

Hi Samantha - so sorry that you have to deal with this. I can understand how you could feel overwhelmed. Everyone here is so helpful, feel free to pop in anytime. Brambledog as always is quick to contribute her sage advice! Focus on what you CAN do to bring yourself comfort and not on things that can't be done. Be well. Lottie

People with RSD should never ever have any other health problems. This is enough. The man upstairs must think we can handle a lot!
Sorry to hear about all your health problems. I couldn't imagine! My body started to fall about pre-RSD. I wonder if RSD can affect organs.

No one should have to go through what you have and ARE going through. So sorry!
Heather

Hi Samantha. I'm so sorry you have rsd and at such a young age no less.
I've felt like my body has been falling apart and my immune system has weakened since I've had rsd. I hope that you feel better soon and maybe someday go into remission. Don't give up hope. In the meantime, I'm sending soft hugs your way.

I'm so sorry too!
Too young!

I have RSD/TOS going for more than than thirty years. I find myself crawling around on ha dands and knees.
Trying to crawl my way i the next meet. It is SO difficult to bathe or shower. And, get dressed.

Oh well, I keep praying' every thing is gonna be alright!


p


asb

Thank you everyone for your kindness, It helps so much to have others to talk with.

For me, i have RSD for 6 plus years. I also find that i have more pain, all over my body. It is easy to count where does it not hurt instead of where does it hurt. How to cope? Try to live one day at a time.

Its true when I go to a doctors and they have that pic of a body and ask to mark where it hurts I just write full body pain, cause there isnt a place I really dont have pain. Since the latest diagnosis of my bones I have been really depressed as its just a waiting game to see how bad it will get and what the treatments will be at the moment I have to keep it in a boot so it doesnt flex which chips the bone when it does. I was just making more progress and now am going backwards with pain since the bones hurt its flaring up my RSD and am turning purple again, I havent had these color changes for a few years now. I just dont want it to be like it was 3 years ago when I was in the ER and hospitalized for flares every 1-3 week for about 5-10 days at a time. Its just I have lost most of my life, I keep thinking that I wont ever have a chance to meet someone and have a family, and experience what most take for granted, like my sister she is jealous of me that I have my mom helping me all the time, where she rides horse every day, has a home a family and a life. If she wants I will trade my life for hers any day. Then my brother yelled at me the other day cause he is a drug adict and he applied for medicaid and they are sending a check to pay for all his bills and instead of my mom getting it to pay them off he wants it just to spend so I got mad and then he yelled at me saying I was selfish and that I ruined my siblings lives for having my mom with me and that my brothers and sister wont ever forgive me. He says Iam selfish where all my SSDI money I give to my mom to pay for bills, i never buy for myself, and all I ever do is try and help even though its very little. where as he being an adict stole our stuff and pawned it, stole my meds and shot it up, I had to put three locks on my meds including a safe to keep hime out and he spends all our money buying tobacco chew and cigarettes but yet I am the mean one that my siblings blame and my aunts, uncles and dad blame my mom saying she made me sick. I keep asking for my mom to have him get his own place but its her son and she cant throw him out, and my depression isnt just my medical issues but dealing with my brother that only cares for himself.

So sorry u have to deal with your family issues as well. It is so difficult to deal with this disease which ca spread and flare up. This RSD really causes me and my family a lot of money. I am thankful that my husband has yet to complain how much money I had spent so far just to bring the pain down.