Results of RD and Pain specialist visits yesterday | Arthritis Information
HI guys, well it was a fruitful day and I feel very positive today, I am praying it lasts.
First my RD appt.
MRI of spine - he said I have a synovial cyst right on the facet joint at L5/S1 and this could be causing a lot of my pain. ( it wasn't picked up by the MRI reporting DR?) My feet are totally messy, he said I have another new fracture, right next to the site of the previous left foot fracture, which has not healed still!!!. I didn't realise that the erosions were showing on a plain XRay, for some reason because I had it done the same day as my spinal MRI's, I thought it was showing on an MRI!!!! Talk about vague! In area of left foot erosions, RD thinks I have a fracture in there too! He said he wants me to put my pred up to 30mg per day for a week and then straight back to 10mg as my ESR was 31 and CRP11, not really high but he said the figures are actually masked by pred and all my joints were sore yesterday so he wants to see if it is the RA or is it fibromyalgia causing the most pain at present as my muscles are sore all over, he was touching trigger points and it was agony. He said my right foot arch no longer exists and this could be making my hips and knees worse!!!!
He said he would not let me have any more Rituxan even if I wanted it as the results showed nothing at all in the way of improvement and he would have expected some improvement in figures and joint count etc. Had 33 swollen, painful joints on assessment for drug and now have more! He suggested that as I seem to manage to tolerate the MTX, he is going to try and get me ona trial for the new IL6 drug, I think he called it Tocsilzumab? (same make up as MTX) If it works then he is trying for a compassionate prescription as I have no govt help left for 5 years with non-government subsidised drugs. As I was heading off to a new pain specialist he was rushing me slightly and I was hoping like him for some pain injections of some sort eventually. My elbow is sore with epicondylitis, which stems from the inflammation of RA around the area and if it does not improve after pain specialist visit then he will send me to a surgeon?
Pain specialist appt.
He watched me walk and sit and stand up from sitting and told me what the problems were and there were many.
He said I have peripheral neuropathy in my feet, intermittent claudication, pre metabolic syndrome, myopathy (wasting of muscles), weakness of all muscles especially hips and pelvic area, as well as shoulders. The obvious RA. FM, OA, DDD too. Feet are not strong enough to get me to walk on my toes or heels etc etc. Spine is awful at Lumbar levels and is causing many probs in legs and feet. He said as I am overweight thru disease process, lack of mobility, prednisone, and obviously the need to diet, a lot of my pain could be reduced just by losing weight. He said he has just lost a significant amount of weight and it was extremely hard for him and that he had none of my added problems.
He was great in explaining everything and said he now wants a team dealing with me, dietician, physiotherapist, occupational therapist, psychologist, himself, GP, RD etc etc.
He is admitting me to hosp on 3rd Sept for spinal injections to facet joints and if he gets the response he expects then 6 weeks later he is going to burn the nerves off? He increased my oxycontin from 30mg am and 20mg pm to 40mg am and pm, no more Tramal, but I can have Endone also for breakthru pain 5-10mg 4 x a day. I was very pleasantly surprised at that, usually the pain specialists try to get you off of the meds, but he said as I am waking up in pain, moreso than just RA, he wanted me to have great pain relief so that I can be more mobile and try to swim/exercise daily in unison with the dieting etc, if I can't succeed then he said I may need a psychiatrist involved to get me over the barrier of feeling useless etc. He did say that considering my health problems he would have expected major depression but he said I did not seem to be too bad and I can put the psychiatrist on hold for now. He said when I do hydrotherapy I was not allowed in over my abdomen as my chest muscles have weakened so much that I would not be able to breathe adequately for a few weeks. I feel so indebted to him for giving me hope, he has ordered a Podiatrist to make me some orthotics, must have a deep heel, and a long arch support with metatarsal bar, he said I must wear these all day from getting out of bed to getting back in.
The previous pain specialist said he could do nothing for me except spinal injections maybe when the pain was intense?????? This guy totally helped me to see that by doing the exercise with his help for the pain I will give myself a longer life, I know this is blatantly obvious but I am so negative by myself and then by some of the Drs too that I couldn't get out of the rut. His drug regime will definitely reduce my pain levels to enable me to exercise, he said I must pace myself and use my energy wisely. The weight loss will come but my body will start to be a lot healthier, so wish me luck, I feel really excited about taking part in life again with adequate pain relief!!!! Hugs Janie.So glad you had such a thorough doctor and it certainly looks like there is great reason to believe you can get adequate pain relief! I'm so happy for you!
This is great news! I have a wonderful pain dr. It seems people either find a fabulous one or a rotten one. Glad this new one is in the fabulous catagory! I hope the spinal injections do the trick. You have been in pain for too long.
Sounded very productive, Janie! I hope the injections help you greatly!
Here's to hoping you are almost pain free soon!
joonie2009-07-14 21:44:46
[QUOTE=janiefx1]...so wish me luck...[/QUOTE]
LUCK!, best wishes, cheers, and congratulations.
Keep us posted with your progress. I am glad you had an encouraging and productive appointment. We all need those from time to time. My best wishes to your success.janie,
Pleased u scored a couple of docs who spent some time to explain what was wrong and what might be done to ease your pain. Pred and the inability to walk far/fast sure does nothing to one's figure. Hope u can get the new drug and on a compassionate prescription.
If u are put in hospital, which one will it be?
Sending u best wishes and lots of positive vibes.
Lorraine
Thanks guys, not sure about the new pain regimen though, has made me really feel spaced out, and terribly thirsty, I guess I will get used to it, it enabled me to go for a walk yesterday, a real short onr as he told me to pace myself and for a change I am doing what I am told, he he he
Speaking of walks. Yesterday... I went for one... kinda. LOL! I was going to walk from my daughters Dr's office to the hospital where I had to go for the echo and heart monitor. They are close to each other... just one is a ways in front of the other.
So... yesterday... I went out my front door and walked across the rail road tracks, and around the store building and back down the road to my house. I figured if I could make that walk, then I could walk from daughter's Drs office to the hospital.
Well... I was sadly mistaken. I about killed over from the lower back spasm before I even got half way thru my walk. By the time I got back across the rail road tracks and to the edge of my yard, I was in really bad pain, and had to stop and bend over to help alleviate the pain in my lower back.
All the while, my son sitting on the front porch saying "You can do it moma! Are you ok? You hurting?"
So... I cancelled my echo/heartmonitor appt, so I could be present at my daughters appt, and so I would not have to walk to my appt.
joonie2009-07-15 17:25:19Janie,
It sounds like your appts were very productive. Isn't it nice to have someone really listen and take to heart your concerns and offer concrete solutions? I am so happy that you have a plan in place. Keep us updated!
Phats
Janie, good appts and I especially like the idea of a group working together to help you. I'm so happy to hear that you had a short walk and I hope you can keep it up. Lindy
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