Hi girls

OMG..the last few days have been so rough. I am in so much pain and SO TIRED! All I want to do is sleep. I am 36 yrs old and had a hysterectomy at age 30. They left my 2 ovaries but one was diseased and had to be removed in October 2007. I have had so much to deal with. I have one working ovary and it looks like I still have PMS symptoms once a month. I wasn't paying any attention to it til the last couple months. I now know when it starts up. It seems to be making a mess of things. I think the weather change here in PA is not helping either. It got cold and too quickly. Now it's rainy and cool. I'm miserable!

Do you have flare ups with PMS I guess would be my question??

The last few days I have had unbearable pain and been so tired. I'm not really irritable though. Just pain everywhere and tired. I am hot then cold, sweating all the time and just feel gross.

I'm back to having the night sweats also. It's horrible. I am literally soaked at night. I then go crazy because my husband has the fan going. I have to keep washing the sheets. I can't stand this.

Last night I fell asleep on the couch at 8:30 pm. My right eye hurt so bad and I could barely open it. My entire body hurt and I felt sick. My right eye has been effected horribly and the eye lid droops down. I have pain in the eye as well. It feels like a piece of glass in it or something along those lines. It's horrible. This morning I woke up and my eye was barely open. The Dr said the RSD is doing this but gosh..it's horrible! My kids noticed my eye and said it looked bloodshot.

I'm so tired of all this. I want my life back but I know it won't happen. I'm having trouble walking at times and I get heart palipitations, dizziness, you name it..i have it! I'm in the works for ketamine treatment but don't know when that will happen as of yet. I hope soon!

Thanks in advance for your replies.

So sorry you are having such a hard time. I'm a mom too, and I know how hard it is to be "peachy" when you are in pain. My RSD flares up much worse the week before my time of the month, and is also bad during the week of. I actually developed PMDD after I had been on Neurontin for a few months. I had horrible anxiety that would keep me up at night, and I struggled with depression that was more that I could handle on my own. My doctor put me on Cymbalta because it is recommended for nerve pain and is an anti-depressant. It has helped a lot. I still get PMS (my 10-year-old who is my oldest of 5 once asked me why I have been so grouchy for the last three days), and the flare-ups, but the mental symptoms are MUCH more bearable.

You should never go through this much misery without consulting your doctor. If he/she won't do anything, you need a new doctor. I really hope you find some relief. Good luck!

Hi Peachy

It took me a while to make a connection between the PMS and the RSD. (It takes me a while to figure a lot of this stuff out!!) The worst of my RSD is in my head. For a while the RSD was bad in my right leg, too. I've had a few Lidocaine infusions and a lumbar block that have made my right leg a bit better. But my head (especially in the occipital area) is just really bad, especially when I use my arms. And now I've made the connection that it's bad when I've got PMS - the pain shimmers over the hair on the back of my head and I've got to be careful how I move.

The only meds that work well for me when I am suffering from severe head pain are Fentanyl (I'm up to the .75 mcg patch), Percocet, and Methadone. I also take Cymbalta and Topamax and wear a .2 Catapres patch for HBP.

I've always been afraid of menopause because of wrinkles and osteoporosis. But now I'm actually starting to look forward to it because of my head and RSD!

Take care, Sandy

Hello,

I have noticed for me there seems to be a connection. My pain alway increased the week before I started. It was worse in my legs. I have full body RSD/CRPS. My OB suggested we remove the lining of my uterus (spelling ?).
It did help my pain until the last couple of months. I go to see my OB next month I am going to bring it up again.

I just came of my perior a little over a week ago. I am currently nearing the end (I Hope) of an awful flare up. My deep pain, burning, pins and needles and sensativity are full body (this is happening in my mouth and on my face)and far exceed a level 10 on the pain scale.

However, I had a wonderful stressful weekend (last weekend) with family and friends. My daughter in law is going through some medical issues and comes to me daily for support. Life in general is taking place. I say all that to say add it to PMS and it just makes the stess level go up and us RSD'ers know what stree does to us.

So in addition to the pain of PMS look at the other situations that are aggrivating your RSD. So my answer to your question is yes for me I think PMS adds to the pain of RSD.

I hope you have a better today soon!!!
Take care,
Sherrie

I have more pain shortly before my period too. I think it's due to an increase in hormones, at least partly, that does it to us. If I find anything that explains why, I'll come back and post it. You're definitely not alone!

Hugs,

Karen

Thanks for your replies. It has been hard trying to figure all of this out. Nothing is easy about RSD and everything that goes with it. It seems to affect everything and also everything seems to affect IT! UGG

I have also been paying attention to what I eat and drink, activities, etc to see what flares the RSD. It's amazing how many things bring on a flare. I too have full body RSD now and it's terrible. I have it bad in my face as well and also the nerves in my mouth. On occasion I will want something other than water to drink and I can't handle it. Sugar is not my friend. Anything sweet, forget it! Sometimes I can handle watered down juice or a soda but it's rare. A soda feels like acid in my mouth! I have trouble eating things because everything tastes weird and sometimes I just have pain chewing and swallowing.

Through all of this mess, my hormone levels have been tested and my levels seems to be awfully low. They aren't too concerned yet but it's in question as to whether this is going to put me into early menopause. It's already a given that it would be early due to the hysterectomy and only having one ovary but I'm not ready for menopause yet! I'm only 36!

Also, I am worried about osteoporosis. Anyone have issues with this? My entire body cracks, grinds and creaks. I crack my neck and back at least 20 times a day. I sound like a roll of bubble wrap. SOmetimes it hurts when I crack because it not only cracks..it pops! It's horrible. My left shoulder now cracks and pops with movement. My right one is the TOS side and it's stuck but it grinds alot. It's gross. I feel so weak everywhere and my feet and ankles crack probably 100 times a day. People hear it all the time and look at me weird. Nobody has looked for osteo but it also runs in my family so I'm a little worried.

It seems to be always something. This is an awful awful disease and I feel for every single one of us who has to deal with it!

Don't know why I neglected to mention this on my previous reply- I'll blame RSD memory problems . I didn't know I had RSD for the first year because I got pregnant just weeks after the surgery that followed my injury. My pain improved to almost nothing, and I thought the surgery had worked, and I was done with the pain. About 6 weeks after I had my baby, the pain returned and my very confused ortho sent me to my PM doc who figured out that it was RSD. I did some research, and it turns out that it is VERY common to go into complete remission during pregnancy. Some doctors think it's because this is an auto-immune disease as well as a neruological one, and when you are pregnant, your immune system acts differently to protect the fetus from being seen as a foreign body and being rejected. Others see a hormonal connection. I think it's probably a little of both since so many of us see a hormonal connection around our period.

I have read that osteoperosis is one of the symptoms in stage three of this disease. it is apparently visable on x-rays after enough time has passed and the disease has progressed. I would talk to your doctor about this and tell him/her about your family history. Maybe you could take a calcium supplement to protect yourself. Good luck!!

There are no "stages" anymore with RSD. If they are referenced it should be for historical information only. No one has every single simple progressing through rsd. People have many symptoms across the board. If a bone scan is taken within the first three months, it usually shows up as "rsd positive" because of the blood flow abnormality which causes changes to the bone. It can then clear up and may or may not lead to osteporosis. I've had rsd over 6 years now and don't have osteo.

I agree with amb. Talk with your doctor to see if a supplement would be enough or whether one of the prescriptions would possibly be better for you. Especially if you already have osteo.

Hugs,

Karen