Hi everyone,

Thank you all ever so much for your kind words and prayers - they mean a lot. I'm sorry for only just updating you all but my arm is in a major flare at the moment and I am having to type one handed which is extremely difficult!! My arm has been more painful for the last few weeks and I thought it must have been going into a flare but on Tuesday my wrist started to swell really bad, become red and even more painful within the space of an hour!!

I had to be at the hosspital at 8am yesterday to sign into the Daycare ward. Before I had the procedure, the nurses came to take my temperature etc and we told them about my arm. They were extremely shocked by how red and swollen my arm was and sent for my PM Doctor to come and check it out. The nurses on the ward thought that I had a really bad case of Cellulitus (infection) because of how swollen and hot my arm was and also because I hadn't been feeling well the past few days.

When my PM Doctor came he too was shocked about how bad my arm was. He asked me a load of question about what I had done to my arm, when the symptoms started etc. I can't think of anything that could have caused my arm to flare this bad. My PM said that based on the symptoms I was having he thought that it was the RSD in a major flare again. He said that it could also be infected but he isn't sure, he has given me some really strong antibiotics just to be on the safe side though.

My PM Doctor thinks that this flare has been caused by a number of things such as the pressure of going back to school, ctuches, too much writing and typing on the forum and stress. He said that it looks as though school is way too much for me and that this flare is my bodies way of saying "This is way too much for me". I feel as though my body is shutting down on me. He adviced that I should speak to the school and tell them what has happened and ask if they can review things.

After the Doctor went, the Anaesthetist came in to check my heart and thing before the procedure took place. She was really nice and explained that the procedure would probably cause my pain to go up so she was looking to see if there was anything that might help. In the end it was suggested to do an epidural and in the epidural they would put in Ketamine!!

Whilst I was in the Operating Room and asleep, the doctor injected Ketamine into my spinal cord and then proceeded to manipulate my leg and mould the cast. The procedure took about 40 minutes but it took me about an hour to wake from the Anaesthetic!!

Once I woke up I noticed that my pain wasn't as bad, it was still definitely there but didn't seem quite as bad!! Instead of the pain in my leg being a 8 out of 10 on the pain scale it was about a 5!! I couldn't believe it, ketamine has been on my mind for a long time but I didn't think it would work because EVERY other med has failed!! My doctor came and saw me and explained that because every other med i have tried has failed, the ketamine was my only hope and best chance of lowering the pain. My PM explained that the ketamine wouldn't work forever and that i would get a 24 hour relief at the moment. My PM said that because the Ketamine seems to be working, he might be able to prescribe it for me. Over here they wont just prescribe meds and he explained that not many of his patients have tried Ketamine. The Ketamine really scared me but i have got to the point where i will try anything for the pain.

My PTs also came and did some work on me, whilst i was asleep they did a lymph drainage to try and help with the swelling but it doesn't seem to have worked. We also had a long conversation about school and were told to speak to my teachers bur to take things REALLY carefully. They said that they would support us in everything. It is thought that school is WAY too much for me and that this severe flare is my bodies way of saying it has had enough.

When I woke up this morning, the pain was back to an 8 and half on the pain scale ... the ketamine lasted about 21 hours. My arm is REALLY swollen and REALLY painful. I started taking the antibiotics today but they don't seem to be helping. My mum has to call my doctor firat thing tomorrow to see what he suggests. If the pain doesn't go down in my arm any I think i will go to ER has it really hurts.

It took me 1 hour to type this 1 handed!! I have to go but will keep you updated when I can. I might not be on the forum too much has my doctor feels that the typing isn't helping.

Take care
Alison

PS - I forgot to say I go Wednesday for the splint fitted.

Hi Ali!

I'm so glad you got such relief with the Ketamine!!! I hope you are able to get this prescribed. I will add this in my prayers for you.

I will keep you in my thoughts and prayers for a positive outcome with the splinting...also prayers that your arm returns to "normal" quickly.

Gentle Hugs,

Abbie

Hi Ali,

I'm so glad that the Ketamine worked for you. A light at the end of the tunnel!!! Along with many, I have followed your progress on this forum and also have watched your responses to RSD on YouTube.

I do want to mention that if you need to go to the ER - to have them check for a blood clot. I had a blood clot in my RSD arm which caused extreme pain. It's just a thought.

We are all pulling for you Ali. I hope that they look into the ketamine soon because you shouldn't have to live in pain.

Good luck and please keep us posted.

Alison,

It is so good to see that the Ketamine provided you with some relief! Maybe this will be the start of something good. Being in less pain is always good.

I strongly agree that they should check you to eliminate the possibility of a blood clot in your arm. Please do raise that question with your doctor or with the ER.

Your education is so very important, and if it comes down to spending less time in the online community please know that we will be glad to hear from you when time permits, but your studies must come first.

Take care,

EJ

Hi ali- I think it is great you found something to keep the pain level down. I really hope they can prescribe it for you. Please let us know, maybe thru all this pain something good (ketamine) will be your hero!

Love
Debbie

Thank you all ever so much for your kind words, I really appreciate them

My arm is still in a major flare and really bruised and swollen so I think we will get it checked out if it gets no better. My PM said that the symptoms I had were RSD but the pain feels different. The pain I am getting is like my bones are aching and pins and needles in my fingers. I have been so close to going to the ER because of the pain but don't want to waste their time if it is just RSD.

My mum called my nurse yesterday and she said if things get any worse to go straight to ER. My PM Dr is looking into the Ketamine but because of my age he has to get someone to approve it has it isn't licensed for use in children. Hopefully they will be able to prescribe it.

Thanks again everyone ... I will keep you all updated.

Alison

Best wishes to you, Ali! I was going to say, "So glad it's over," but RSD is never really over, is it?

Sending you a boatload of warm pain-free hugs.

Ali, I hope you can get the ketamine treatment & that it works for you. I am so sorry you are in so much pain hun. I just wish this didnt happen to people so young. It does sound like you just can't do all you are doing. Maybe some kind of homeschooling would be best for you. Do you have that option in the UK? I hope so. I know you have a tutor now but here in the states kids can do all of their schooling at home. If you need to go to the ER you should go. If they can help you there is n reason to be in this much pain. I will be thinking of you sweets.
hugs, Denny

Hi Ali

Glad to hear things went good for you. I hope you can start living your life. You are a brave girl who has been through way too much. I wish you all the best.
You are such a sweetheart to everyone here, no matter how much you are dealing with, you are there to answer a question or offer support.

Keep us posted..