Being judged is one of the biggest problems we come across. I feel like I have to crawl on my hands and knees for people to believe me. (My rsd is in my right foot and entire leg) My own doctor judges me. It's bullsh** when people do that. When it rains...it pours! I'm sorry your in a painful flare and you're child is sick and all this stuff is happening at the worst time. I hope you and your family is better soon!!

Heather

I am sorry you are going through such a rough time Allanira. I understand about the judgement, like many of us do. I hate that at 46, I had to stop working because of this wonderful disease One good thing about that is the judgement passed down on me from my bosses is over. Oh, they are probably saying things about me now since my STD and LTD appeals were finally approved, but at least I am not there to hear or see it. I have had this for 23 years and some things never change, no matter what I say or do.

I hope this current flare calms down soon and I hope you can get some sleep tonight.

Nanc

My flares usually last about a week so it should end soon. I finally got the meds situation figured out and I am back on the Lyrica. I am also on a neurological supplement, and a ketamine compound cream. The cream makes my skin feel weird as in not quite dry but not lotiony either. I am hoping that by the end of next week I will have all the meds consentrated enough in my bloodstream that they will start working. Ok I think my lo is asleep (I really really hope so). My oldest is in bed and I really want to be also.

Hi Allanira. I hope you got some rest and, dare I say it, even some sleep this weekend. I have a hard enough time just working full time, I can't imagine have to take care of two little kids with this stupid disease.

I know what you mean about being judged. It just sucks. I look fine too. The physical signs of my CRPS are pretty slight - a bit of swelling and a bit too much hair (but since I'm not very hairy to begin with, the amount of hair on my right arm could be a normal amount for someone else). I take public transportation to work every day and I am constantly dodging people because, as you will know without me saying it, I really don't want to be touched. Of course, to everyone else, I must just look strange. It is London, people bump into each other without even noticing it and here I am dodging like a lunatic.

And then there's work. Everyone there understands the Equalities Act and they are all about diversity. But they have never heard of CRPS/RSD. Who has? When I first returned to work my hand was still very, very swollen and I could barely move it. Now, they see it *looking* so much better and moving, not normally, but still better than before. And they all think I am doing so much better. Of course, the pain is still horrible and I know that if I tried to accurately describe my pain to them, I would just sound like a crazy person. But the reality is, I can't be as productive as I used to be even though I look fine.

Try not to worry about what other people think. They have no idea how amazing you are for managing all that you do. But we do. You rock!

Kim

Oh I know London. I was stationed in Mildenhall. That's where I met my husband. I loved England when I was stationed there. There was a fudge shop in Cambridge that was awesome. So I'm still flaring, and yes I did get some sleep thanks to my wonderful man. He let me get 3 hrs before he got overwhelmed with dealing with both boys. Then last night he took a couple feedings off my hands and let , e sleep. He's now suffering and has caught the crud me and my oldest had. My meds still aren't concentrated enough to help with the pain even though I'm doing the ketamine cream 3 to 4 times a day. It sucks. I've lost most of the hair on my left leg. At least I won't have to shave as much. Stupid disorder. Stupid nerves, and stupid people that made me think I was going crazy. I am done with trying to put on a good face and hiding. I am done with people that want to stay ignorant. My father in law said said I was probably not in as much pain as I said I was. I asked if having his testicles s continuously crushed in a vice grip hour after hour, and day after day for 10 years or more hirts. He turned pain then green. It was a lovely day. My husband turned pale too. It's a good way to describe it to guys.

lol... tell'm girl! ... right on ...lol

Allanira, that was just fabulous!!! Well done!! Hahaha, serves him right

Bram.

I was being very mean by saying it. I don't like being mean. My mom and dad taught me to be a lady. The bad thing is when I hurt I tuurn into a devil lady. I don't take it out on my boys though. I only take it out on the people that decide they want to be ignorant and stupid. I do have that much control. By my asking him that question I explained completely how much I hurt. Especially during a flare. Some people don't understand unless you put it into terms they can understand. Oh a friend asked me yesterday what my pain feels like. I told her how it felt to me then had her read the symptoms of this disorder. She said oh son of a biscuit eater (yes I changed words to make it nicer). She is having a lot of those symptoms in her back after loosing a game of chicken with a deer a couple years ago. She broke and pulverized some vertebrae. She has had surgery to repair some, and untrap the nerves. So I told her to talk to her Dr about it. They can run some tests to rule out other stuff. I also told her that IF she has it then mine won't react as hers does.

I completely understand about others not know what you are going through. My kids are grown, but they can be judgmental and insensitive when it comes to the house. But do they offer to help??? Of course not. Ha! People get so wrapped up in their own lives that they forget to stop and encourage others that are in pain or deal with illness, etc. I don't know what I would have done all these years if it weren't for my church family. Also, when you are in pain and upset, your baby can sense your moods. Maybe if you can take a deep breathe before picking up the baby and trying to calm your mood, it might help the baby's too. Can't hurt to try. I have been walking with a cane or a couple years now because my RSD has caused severe osteoarthritis in both hips, but my pm dr says no to surgery. It is difficult when you are having a flare, every step hurts etc. We can all have our times to rant and complain, but that is what we are here for is to encourage and listen to each other. Keep your head up and try to smile.....that'll make really wonder what's up with you. Lol! Take care and soft hugs. Suz
*admin edit* Take care all!