Hi Daniella,

I also suffer from delayed pain a lot!!! I have been away with my nanan for a long weekend break and even though I didn't do a lot of walking as we took it really steady, I am paying for it a lot today and have had to miss school because of it!! It is SO frustrating as I know that if I have had a busy day, I will usually have to pay for it for the next few days and so many people just don't understand!

Someone on the MS forum has a signiture called 'For every day I play, I have to set aside a day to pay' and I can totally relate to it and think it applies to RSD and most other chronic pain conditions also!!

I haven't really found anything that helps with the delayed pain that much and my doctor told me that there isn't really that much you can do about it other than take some pain meds to see if they help a bit. I don't understand the delayed pain thing really either ... I guess it's just another RSD thing to baffle us!!!

I have been onto a Pain Management Program twice similar to the one you went on at the Cleveland Clinic. I had to have about 4 hours of Physical Therapy a day and then see Psychologists and keep active in the evening. It was SO hard and I honestly don't know how I managed to get up 5 days a week for it!! I remember screaming at my mum every day saying that I didn't want to go as I was just too tired and in a lot of pain!! The first PT Program helped a little as it got me walking short distances again although it didn't help with the pain but the second program didn't help at all. My PT's are thinking about admitting me into hospital again sometime soon to do some more intense PT with me before trying Botox as a last resort.

I understand what you mean about the liver issues from medications. I'm not on any meds at the moment other than Ketamine when I am in a really bad pain flare as none helped and both me and my doctor didn't see the point in me being on them if they weren't helping. It was only when I came off the meds that I realised that they really weren't doing anything for me. My Doctor was pretty concerned about the risk of organ damage also from long term use of meds, especially considering my age so thought it was probably best if I came off thme seeing as though they weren't doing anything.

I wish I could help you more but I can't unfortunately. Please just know that I totally understand what you are going through and I hope you feel better real soon!!!

Take care,
Alison.