Way forward?

[Griggser]

Haven't posted for a while. I'm struggling at 15mg of pred, no longer taking hydroxychloroquine. The last time I saw the rheumy I had got down to 12mg of pred, well I say got down I was not comfortable at this level. My hips now are a real pain and wake me up early mornings. I manage to do bits and a bits and pieces around but am struggling more lately. I've had had sinusitis for the last two weeks so sleeping has been a real issue.

I just don't know what to do next, 3 years on and still in almost constant pain. The muscles in my back are very tender and if I turn in a certain way I get a very sharp pain. My left hand has decided that it wants to join in and is painful all the time, it's like toothache in the knuckles if that makes sense.

I have been taking Zapain at night as the doctor suggested it might help and I think it is as I usually wake after about 4 hrs as its worn off.

Very frustrated with this illness and just can't seem to get on top of it! Feeling like crap and being told you look well is not helpful! I've also put on a bit of weight which has bugged me, after losing so much, but it's the I feel sorry for myself so I'll eat something nice syndrome.

So I'm guessing no one has any magic wands spare they can send? Otherwise I'm just not sure what the hell to do next.

[PMRpro Ambassador]

When is your night time pain then? And has a physio assessed the state of your back muscles?

[Griggser]

Thanks for your very prompt reply. I’m always a bit uncomfortable in my hips but at about 2:30am it wakes me up and I struggle to get back to sleep after that. I’ve not seen anyone about my muscle pain in the back lately. I’ve had this sort of pain before and the Physio did work on it. I probably should be going some exercise for it but am not very motivated in that area.

[PMRpro Ambassador in reply to Griggser]

Has your doctor ever considered ankylosing spondylitis rather than PMR? The back pain that causes can spread to the hips and typically appears earlier in the night than PMR pain: 2-2.30 rather than 4-4.30am. Sacroliac pain, very sharp and horrible, is also typical in AS. Otherwise they can be very similar.

[Lizwillis]

Oh Griggser, so sorry to hear all this. After you had been doing so well. The sinusitis must be just capping it all off. I can’t remember whether I said at the group PMR meeting but my diligent Rheumy has had various X-rays done and diagnosed two shoulder impingements with torn ligaments and arthritis in hips, so this now explains some of the pain I am getting, however, a bit like you, still getting other pain in other places, but she and “ our” doc think this might be an overlap with Fibromyalgia. I have no idea! I have now got down to 6 mgs of Pred and in fact this doesn’t seem to have made much difference to the pain I have. I take paracetamol when I need to.

Very interesting what PMRpro says could possibly be causing this other pain.

Also, took on board what Sheffield Jane said about taking Amitriptaline at around 8pm and have started taking that, and I think it does help with the sleeping and don’t wake up feeling woozy.

Do go and see the doc and hopefully he will be responsive. Let us know how you get on.

[Ruadh]

Agree with PMRpro. As I was reading your post, my reaction was 'possibly' ankylosing spondylitis. (I suffer from AS). Dietary factors can spank up the inflammatory processes of AS : starch being the biggest and then red meat. However. First for the DX. Must see a rheumy who preferably has a sub-specialism in AS, as it is not always an easy one to diagnose.

I don't know where you are in the UK, but can speak for a few hospitals as being excellent : i.e. in London; Leicester; Bath; Norfolk an Norwich; Royal Devon and Exeter; Leeds.

The National Association is NASS : National Ankylosing Spondylitis Society. NASS has an excellent website, carry an exhaustive amount of information, and with a members forum. Membership is by subscription, but also, much of the information is free and freely available on their website : . The administrators and directors have evolved into a driving force for pushing knowledge in AS, have developed specific areas for Health Professionals, from physiotherapists to education of GPs. Just amazing. I have been a member for many years now and stand in awe of the achievements of our Society.

As far as an excellent and well run patient group goes, I suggest KickAs, a forums group, international, up to date information. Friendly, informative and supportive - from diet and recipes to medications, drugs, alternative approaches, physiotherapy and the latest 'spondy' joke ! kickas.org

But first, a diagnosis.

Apologies for the length, but hope this has helped. Take care and the best to you.

[Linny3]

Hi There

So sorry for your misery. As with most of us here we can certainly understand and sympathize. I have come to realize after 1year and 6 mos. that prednisone is the answer. Keeping it high enough to take most of the pain away is the way to go. We just have to deal with the side effects as they come. Sounds like Fibromyalgia may be part of the problem and it never hurts to check out the ideas others have mentioned. I have a bad back and know the pain from that. I believe pmr is making the back issues worse. It is not a good feeling when you just start feeling helpless. That is where I was a few months ago. It was driving me crazy. They I found this site and it is truly a God Send. Spend some time here and read, read and read some more. Something may pop out that will help.

Good Luck in your quest to find some relief.