I’ll never understand this illness

[Janann25]

Just over three weeks ago, my rheumatologist suggested that, because I was struggling on 4.5mg Pred, I should increase to 7mg for three months, then check with him again. For the first three weeks, my symptoms really improved, although I still felt tired with some pain. However, several days ago, I found that I started to feel more uncomfortable as the day went on and then, for the past three nights, have had such bad pain that I’ve not been able to sleep. I haven’t got joint pain, the pain is in my neck, shoulders, arms and ribs. Nothing in the hips, apart from the pain from a low back injury from many years ago. I’ve tried paracetamol but this doesn’t help. Strangely, I don’t have restriction of movement, which was a key symptom when I was first diagnosed in 2017 and which I’ve had to a lesser degree during the period of the illness. Rather, I feel as if this upper body area is totally tensed and I can only find relief by standing and moving around.

My reason for writing - yet again! - is to ask whether anyone else has found their illness following this pattern? I have to confess that I’m now wondering whether I actually have a totally different condition because none on this follows the more usual format of PMR. I would really appreciate any advice because I have got to the stage where I put off going to bed because of the pain and I’m at a loss as to what to do next.

Incidentally, I take my Pred - enteric coated - with yogurt at 10pm.

[SnazzyD]

Hello, your description of bad pain but no restriction of movement rang bells of Fibromyalgia. That’s how I experienced it. See if this rings any bells. fmauk.org/2-uncategorised/5...

creakyjoints.org/about-arth...

[Janann25 in reply to SnazzyD]

Thank you for your very quick reply and the respective links - very interesting. Some of the points seem pertinent to my symptoms but, while the links say that the pain is both upper and lower body, I only have the pain above my waist. Also, I don’t feel this pain during the day, only just late evening and during the night. Trust me to be different😉

[SnazzyD in reply to Janann25]

I was diagnosed with Fibro and I never got lower body pain, though if someone pressed on the point below the knee it did smart. If I get it, it starts around 11pm if I’m not asleep before then. If I’m awake then it stays that way for hours. During the day it was variable from nothing to feeling like I’d slept wrongly.

[Janann25 in reply to SnazzyD]

Definitely interesting. Is this something which is dealt with by a rheumatologist or would I need to start again with a GP ? In which case, it’s going to be a long time to get investigated judging by recent attempts to see a GP!!

[SnazzyD in reply to Janann25]

Oh my, tell me about it! Was waiting on hold for an hour for my GP and gave up today. I was diagnosed by the Rheumatologist after referral by a unicorn.

[Janann25 in reply to SnazzyD]

You don’t know whether to laugh or cry do you? 😆/😢!!

[SheffieldJane]

My first thought was “ something else has joined the party”. Then I wondered about your pain being bad when your Pred levels are at their lowest. My Entric coated Pred takes 4-6 hours to get into my system, so it would not help my sleep taken at 10 pm. You could experiment with taking it a few hours earlier. I have rescued myself by doing this recently. Also I think that Entric coated Pred is weaker and although I am on 7 mgs, from previous experience I think I am getting low adrenaline symptoms. These are all possibilities to discuss with your Rheumatologist. I hope that you can get a priority appointment. It warrants one in my view.

[Janann25 in reply to SheffieldJane]

Thank you - I was also wondering whether “something else has joined the party” which was my reason for asking for advice/comments from this group. But I also find your comments about coated Pred very interesting. I’ve always thought that taking my dose at 10pm - and allowing several hours for it to get into my system - would help prevent the 4am onslaught of the illness but maybe it’s taking longer to work for me. Oh, how I HATE this illness.

[PMRpro Ambassador in reply to Janann25]

But you are suggesting that your pain starts earlier in the night? Maybe the antiinflammatory effect isn't lasting the full 24 hours? Would be interesting to know if changing the time youtake the pred helps the overnight pain - if it did it would suggest it isn't fibro.

[Janann25 in reply to PMRpro]

As soon as I get into bed, I feel as if my upper body is tensed up, then the nasty pain starts about 2am and doesn’t stop until I actually get up and start moving around. Very weird 😳. Actually, I’ve just thought of something else. I won’t go into details but I was prescribed Pregabalin before my symptoms were diagnosed as PMR and I’ve been taking it ever since - up until a couple of weeks ago when the doctor agreed that I start reducing it. I know Pregabalin is used for nerve pain and wonder whether stopping it could cause the current problems. Have you ever come across this?

[PMRpro Ambassador in reply to Janann25]

That was the next question I was going to ask: back pain at that sort of time which improves once you are up and moving around is typical of ankylosing spondylitis. Women present very differently from men, a PMR-presentation is not unusual and as many women as men eventually develop it. It might be worth asking the rheumy about that.

[Janann25 in reply to PMRpro]

Thank you very much - I’ll send an email to him on Monday. I’ll let you know what he thinks.

[Jane424 in reply to Janann25]

I do find that taking a muscle relaxant at bed time helps.

[Jane424 in reply to SheffieldJane]

It helps me to take my prednisone + pepcid in a banana at around 3.00 am when I wake to pee or turn over. My mornings are much better. Because my dose 10 mg is high for me, I divide it and take half at early lunch (11.00). Am sleeping well, including a nap after lunch. Am 81.

[SheffieldJane in reply to Jane424]

That makes sense.

[cranberryt]

When I had trouble getting through the night, my doc suggested splitting my dose, half morning, half eveing. It was low enough that it didn’t interfere with my sleep and it worked. Stayed at a split dose for a month then tapered by 1/2mg every few weeks. That said as other mentioned, it totally could be something new so it’s worth getting checked.