Hi everyone,

I suspect that my RSD might have spread to my left arm now. I already have it in my left leg and right arm and I fell a few weeks ago whilst going out to the car as my leg gave way. I put my left arm out to try and save myself from falling and knocked it quite a bit and ever since, it has been really painful.

I don't have any visible symptoms at the moment but my nanan says that my arm looks a bit swollen (i'm not sure if it is) and my arm keeps going REALLY hot and sweaty all the time!! I have a bit of the burning pain and a deep bone, aching pain which I get in my other RSD limbs quite a lot also.

I'm trying not to panic too much until I see my PT's next Wednesday and see what they say but it is really scaring me - I just don't want it to spread as it's bad enough dealing with it where it already is!!

I just wondered whether anyone had any ideas as to what might help until I go to my PT session? I don't take any medications at all as they didn't work for me and the side-effects outweighed the benefits so after speaking to my PM Doctor, he felt it was better if I came off them altogether.

Any help would be greatly appreciated and I will keep you all updated!

Oh honey......I am just so sorry to hear of your suspected spread. I totally understand how worried you must be, and no, you don't need to deal with any more pain than you already have. I wish I had some advice to give you (you've always been able to offer such sweet wisdom for my OWN concerns) but I think that trying NOT to panic right now is the best thing you can do for yourself. It might also be helpful to take daily pictures of your arm to see if you can notice any changes in swelling or color (try using the same lighting each time, as that can really affect what shows up).

Just try to do whatever you can to keep yourself calm and relaxed until you can see your PT again. You know that you have a wonderful group here that love you and will be praying for you. You can always talk to us and we understand how you're feeling. Perhaps this is something as simple as a small flare or the weather changing or your hormones??? I certainly hope that is the case. Talk to us as much as you need to. We all love you, Ali. We'll do whatever we can to help you through this!!
Take care and keep us posted!!!

That's no good, Ali. Aren't you scheduled for a trip to Vegas in a couple of weeks? I hope that works out for you, sweetie.

My dear sweet Ali...I hope it isn't a spread of the RSD. Does heat help? I know it has helped me with the CRPS swelling. Also, anti-inflammatory meds such as aleve or ibroprofen?

Take care!

I agree with Cheryl. Try heat and try not to overuse the arm.

I fell a few weeks ago. The only spot of ice on the sidewalk and I find it. LOL
I babied my arm to keep it from flaring. I used heat. I also use Lidocaine patches.

I am amazed that you were able to get off of the meds. You are very brave. I know how bad the pain is and how hard it is to get through the day without the help of meds.

Ada

Dear Ali,

You have a very wise head on young shoulders. In case people don't know English Schools are much harder.

But I beg of you to keep an open mind. PLEASE

You have several different DX's going along. An MD told me once, when they start doing that THEY DON'T KNOW.

Having young adults coming in and out of my home all the time with normal
lives, my heart just breaks.

I beg of you, to please ask if something could of invaded your immune system and is affecting your nervious system, bones, etc...

If you have blood drawn make sure you ask for a butterfly needle, this is much smaller of a guage. Alot of blood work isn't accurate, but just maybe something might show up.

Ali forget being so polite, I know it's the English way. Like if someone bumped right into me in the States, I still apoligize. But I know different and they should of for being so rude in the first place.

Don't give up HOPE.

Hang in Their, Roz xoxoxo

Hi Ali, the whole idea as I am sure everyone knows, is to try to keep the pain signals from reaching the spinal cord. So any pain reduction techniques, medications or treatments that you can get certainly makes sense. I would even ask your pain doc if a stellate block makes sense for that extremity now? And not to ignore the obvious, if you hit it hard enough so that it still hurts now, an x-ray wouldn't hurt (sorry about the pun) anything at this point!

I'm starting to think the grape seed extract really helps with impeding the spread. It's so hard to know for sure but from taking it off and on it seems it does. I've seen it suggested that antioxidants are a good idea so I'm trying to get some variety.

It's stupid advice since it can't be followed but try not to fret.

Stay strong and good luck.

Thank you all for the great advice, I really appreciate it and you are all the best friends anyone could ever wish for!!

My arm is still hurting and is still swollen and keeps going really hot and sweaty. My mum was massaging my shoulder yesterday as someone said that it could help and she said it was really tight and felt like I had "knots" in my shoulder which is something that I also have in my other RSD arm and leg. The pressure of my mum touching the shoulder really hurt, especially if she pressed down quite a lot. I'm getting a "shooting" pain that goes from my shoulder right down to my wrist and comes quite frequently throughout the day.

I see my PT's on Wednesday so i'm going to ask them and see if they can suggest anything that might help or any exercises. I'm off all of my meds because non of them worked and they made me really drowsey but lately, I wish there was something that could help me but I know there isn't unfortunately!!

I have been going through a lot of emotional stress lately so I don't think that has been helping. "Friends" that I thought were friends decided to turn their back on me and with my grandad passing away, I have been really upset!

Twink - Thank you for your kind words! We go to Vegas on the 1st March (a week on Sunday) and i'm so excited!! Hopefully it wont cause too many problems and the break will do me some good!

Cheryl - Thank you for the suggestion about heat. It hasn't helped with my RSD leg but i'll give it a try and see how it goes! Also, i'll try taking an Ibuprofen and see if that will help with the swelling as we still have lots in the house!

Roz - I'm not giving up hope at all. Throughout most of my RSD journey, I have had hope and realised that I HAD to be positive to try and get better!! Without hope, we don't have anything!! I have had about 10 different doctors now diagnose me with RSD so i'm sure I have it but my nanan had MS so that is still in the back of my mind - I know I shouldn't think about anything like that but the doctors never did any tests for it so I guess i'm always going to have that thought at the back of my mind.

Imahotep - I did try Grape Seed Extract when Vicc suggested it but it didn't do anything for me so I came off it after a few months. Whilst I was on the GSE, my RSD spread to my arm so I think for me (but everyone is different), it didn't do anything.

Thanks again everyone for your kind words and advice - I really appreciate it and will keep you updated and let you know what my PT's say.

Hi Ali,

I'm so sorry to hear of the stress you are experiencing lately. It is no wonder your body is reacting with inflammation to that type of stress. What do you do for your condition diet wise? Following a healthy anti-inflammatory diet can help support your body especially when your stress levels are high? No SNAC's sugar, nicotine, alcohol or caffeine. Not that you would be smoking or drinking alcohol at your age but even second hand smoke is bad for you. Stay away from diet soda's, chips (crisps) basically fatty processed foods etc...try to make sure you get healthy fats from eating fish and walnuts, also eat lots of fresh fruit and vegetables.

Research is showing that inflammation in the body is responsible for so many diseases. Ultimately it doesn't matter what diagnosis we are given if we don't address the inflammation the signs and symptoms of rsd will never calm down. By making the right decisions with our diet we do have some control over the course of our condition.

Lately along with taking Serrapeptase, a proteolytic enzyme I am supplementing my diet an extract of Turmeric, also called curcumin. Yesterday I went for a long walk on our seawall, it was a bright sunny day and I have missed doing the long power walks I used to do before my rsd. I managed to go much further that I thought I would be able to and much to my surprise I had no swelling or pain, well except for my hip joints, but that it probably just more to do with old age and lack of exercise.

I also do daily affirmations where I tell myself I am healing, each day I am getting better and each day I feel healthy and whole. Changing my attitude towards my health in general and specifically through the use of daily affirmations has helped me a lot.

I'm so proud of you managing yourself and your rsd without taking all the nasty medications they prescribe for us. You are right, there is no point in taking something that doesn't help and only causes further problems.


Your such a bright young lady and we are all really routing for you!

Warm wishes.

MsL