Action!! | Arthritis Information

HI guys, I didn't make it to RD appt, too much pain and unable to do the car trip due to my spinal pain etc. He phoned me last night after seeing my MRI spine and feet reports, he said he will see me on 14th July and he is going to organise some epidural injections into my spine, if they don't help enough then he said it might just be a matter of a surgeon going in and freeing the nerves involved. Thank God he is doing something. Also when I told him I can't walk for more than 10 minutes due to feet pain he said if the erosions are whats causing the pain then it will mean surgery on them with screws and nails etc, but he wouldn't enter into that lightly.

I went to the shops with my sisters by car and then walked around Target and a warehouse shop with my walker, well that evening the pain everywhere was so intense that I was in tears, and yesterday I was wiped out with pain and fatigue and so far this morning I have cancelled appts and the pain is all over, I can't even change the TV channel by pressing the buttons, that action really hurts my elbow? thumb and wrist. I am finding it hard to accept that I can't walk to the shops anymore or even around them when I get there by scooter! This disease sucks. My poor sisters did not realise what my daily life is like and are very upset and worried about leaving me on Sat to return to the UK, I have told them that I have my own little routine and I am and will be ok.

Update on Liam, he is going into hosp on the 21st for his 3 week rehab.

I have a question regarding EPILUM. I am going to ask his specialist when I see her next. Liam had his joint pain start about 6 weeks after starting EPILUM. Recently his neurologist stopped the epilum due to weight gain from his steroids and she said the epilum causes this too so switched him to Tegretol. The strange thing is his pain has improved tremendously, he still has bad spinal pain but he does have scoliosis which can cause this pain. I am wondering if the epilum can cause joint pain?????Anyone have any experience? I am going to phone the epilepsy assn of Australia and ask them too - wouldn't that be the best news ever?????? I don't know if I am clutching at straws or what, he is still an unwell little boy but the pain levels have definitely improved. Thanks everyone for your interest and advice, hugs Janie.

I am sorry you are in so much pain, Janie. I hope it gets better for you real soon.

I hope the 3 week rehab works wonders for Liam.

Please do keep us updated on you both.

Much and many hugs to you & Liam!

Thanks Joonie, I can always rely on you for support, cheers it means a lot to me, hugs Janie.

I just know when your back hurts life is misrable and then to add all the other joints in on that mess... it is just down right completely misrable!

Yes thanks Snowowl, I did visit that site and have it bookmarked now as a favourite, I appreciate your care and concern, thanks, hugs Janie.XXBloody hell Jane, you are having a bad time of it.
I sincerely hope that this can all be sorted out.

Your running around with no spoons left and that's before the day starts.
Thanks Stephen, when I need to destress I just look at your website, thanks for that, Janie.Janie I will be thinking of you and Liam too. I hope this works for you! We can cope with so much but when the pain is as you say life is just plain rotten! You are a strong and brave woman and I know things are going to get better for you. It sounds like you have a good doctor working hard to find you some answers.

Wouldn't it be wonderful if that was Liam's problem... the drug! Oh my gosh, that would just be so life changing for you both. I think of him often and wonder that one so young can endure so much!

All my best wishes for a positive outcome for you both Janie!
Cheers Waddie, I feel your genuine caring nature and I really need it and benefit from good friends that really care, it can make all the difference in my day, thanks again, Janie.The shots in the spine can help put a little wiggle back into your walk. Hope is wonderful thing.BEst of Luck to you Janie...HGWow hope the injections work for you- sorry you are having such a rough time of it.

Wouldn't that be great if Liam's joint pains were caused by that medicine and now that he is off they will go away?!! Praying that's the case. Take care and keep us posted!

My sincere empathy for all you endure. I too hope the injections are a key to being out of pain.

Have you investigated stem cell injections directly into the non-healing or poorly healing fractures in your feet. I have read a couple of studies that indicate stem cells, harvested from your own muscles can provide the matrix upon which even old fractures heal.

I am sorry for not having links readily available. I am using a "loaner" computer and the FRC is the only source I can remember...

Best wishes, Shug

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