Im a diabetic and have PMR.

Do you live in the UK? You could ask your GP to refer you to the pain management clinic at your local hospital.

I wish I had an answer for you Sue but I don't the pain from this is so awful. I hope someone has some ideas for you. Are you doing an anti inflamatory diet? they are very healthy and can be taylored to your diabetes needs.Try to stay positive.Hugs to you

You poor thing!  I agree with arwen.  Pain management would at least help.

PMR without the dreaded Pred?  Horrifying!

 

Oh so sorry to hear you are in pain, i am sure someone on this forum will come along anfd be able to help you. take care.

Sue, I really can't imagine going through PMR without steroid treatment to reduce the inflammation and the pain.  Are you sure that your diabetes can't be more controlled whilst on steroids with a very reduced carb diet and the appropriate medication for diabetics.  There are many diabetics on steroids for PMR.  Nephret who posts here is one and, if she is looking in, she may be able to offer you more help from her experience.

Hi Sue. Are you getting full support from your diabetes endocrinologist and/or Diabetes Support Nurse as well as your rheumy? You hay have to press for a care plan to be made with your GP/MD, rheumy and endo/DSN. Prior to my own diagnosis with PMR, my T1 diabetes (now over 50 years) went wild over several months as the pain increased and I was having to drastically increase both basal and bolus insulins in order to get anywhere near normal blood sugars. It does seem you need full support in order to get your pain under control as this on its own can seriously affect diabetes control, whether T1 or T2, let alone consideration of any corticosteroid treatment. For me, the drastically reduced pain on starting prednisolone treatment, only 10mg/day, actually brought down my insulin demand quite smoothly bit by bit until I was back to normal doses after about a year of very slow steroid dose reduction. I only hope you can get the pain sorted as I feel this may help you overall.

There is nothing other than pred that really does the job - what have they tried? 

I had PMR for 5 years without pred - but it was fairly mild compared to the flare I had at the end of that time which eventually got me on to pred. It wasn't diagnosed - it wasn't choice and i have no desire to go back.

I did aquaaerobics at my level in a warm pool most mornings - the earlier it was, the better day I had. I also did Pilates and Iyengha yoga after using the steam room if it wasn't after an aqua class. They all helped me at least move more easily. Didn't do a lot for the constant pain though. One thing that kept me upright and mobile and I would really recommend you try is Bowen therapy - some of the pain can be from associated muscle problems including myofascial pain syndrome and Bowen can help with that - it won't remove all the pain but it often removes some and anything is better than nothing. You will know after 3 sessions if it is going to help - it isn't an open-ended, "come every week for the rest of your life" approach although I needed a couple of top-up sessions every 6 to 8 months. Many people notice a difference after 1 session.

Other things that can help: an electric blanket BEFORE you get up in the morning warms up your muscles so you can start to move. Once you can move a bit, keeping moving in a warm shower will free up those muscles a bit more and keeping moving every few minutes prevents the myogelosis that happens when you sit. I used to sit with my back against a radiator - a heating pad will help soothe some of the pain. Draughts were a real no-no and a scarf in the car helped the neck pain a bit. Don't get chilled.

There are many anti-inflammatory foods that can contribute to reducing the pain a bit - MrsO is the expert there and says she noticed the difference when she missed her 3 portions of oily fish, turmeric and garlic. Can't remember what else she used.

A couple of people have tried a vegan, non wheat diet and swear by it. I don't eat wheat at all normally (an allergy) and I do notice a difference when I have decided something looked good enough to risk itching! However - that no doubt is a no-no with Type 1 diabetes.

I think Steve is absolutely right - you need diabetes experts to supervise you closely, not just a GP. And do ask them about the American Diabetes Association recommendation of using a low carb diet in Type 2 diabetes and whether it couldn't be adapted somewhat for Type 1 - it is being supported by some diabetes experts. Diabetes dot co dot uk have a section about it - saying it may be of interest to Type 1 diabetics. I googled type 1 diabetes and low carb diets and found a few good links to consider. I'll send you a couple by a private message. That may allow you to manage you BS without it going totally haywire.

There are people I know who have been tried on leflunomide alone for PMR because of pred problems - although it is also associated with side effects that have stopped a couple. There is another drug but I can't for the life of me remember what it is - I'll try to find out.

I agree with Sue, an anti-inflammatory diet would be helpful.  I follow it and avoid any processed foods, wheat etc. - also a special diet for diabetics.

What pain med did your doc give you, Codeine, Tramadol? these sort of painkillers, I know how you feel, it eats away at you doesn't it and its' so debilitating, have you tried the hot pools or maybe your not allowed with Diabetes, I am lucky enoug to have a hot tub and it gives some relief, if you can get to a hydrotherapy pool, i f not perhaps massage but Meditation is also the answer to pain, I do Reiki and Meditation has a great power, if you can learn to meditate xx