Last week, and literally 4 days after my arms began to work again I developed exquisite pain in my right lower back referring to knee. PMR?

[janimaths]

I am confined to the house, sleep OK but the second I stand up in the morning it begins. Only relief is lying down. GP can't see me until a week tomorrow. Down in the dumps doesn't adequately describe how I feel after being given a glimpse of a normal life. Pats - what dose is your Ibuprofen and do you take it once a day? Also this is driving me slightly mad with lack of detailed information. I feel if I could read about it and expect the worst then I might be pleased if all the horrrible things PMR might bring didn't happen to me! Can someone give me a book title on PMR? I had a session with a local experienced physio 2 days ago who said she hadn't seen anything like this before.

[Sue8]

oh my goodness, won't the gp see you as an emergency? It is disgusting you have to wait so long. Sorry no other advice, just wish you a speedy recovery and you are able to feel normal again soon.

[Hidden]

Hi Jani,

So sorry it has taken me so long to get back to you , but have been too busy to go online. I have experienced symptoms like this twice in my life (pretty bad pain going from the buttock area down the back of my leg). It occured during both of my pregnancies. It was diagnosed as sciatica. Remember, I am not a proffessional and you really do need advice from your GP. You also need advice as to whether or not you can take ibuprofen. Your GP must be consulted on the matter of any other drugs used for pain relief. I do use ibuprofen, but only when I really need to and usually 2 tablets per day. I have my rheumy's OK to do so.

If you cannot get to see your GP for a while, then can you not ring the secretary at the practice to arrange a phone call from your GP? If not then can you not see another GP?

I do not know of any book that can be bought regarding PMR and it's treatment. If only! But we do have each other and between us we have a lot of experience.

Pats

[MaisieB]

My GP prescribed the anti-inflammatory painkiller, Naproxen (taken with Omeprazole), for pain relief when I had symptoms like yours, especially first thing in the morning. It did help but so did gentle - very gentle! - movement, even just slightly wriggling the base of my spine before getting out of bed. Once out of bed I put hot or cold bags against my spine and wriggled again. Have you tried taking painkillers before going to bed - if I had been physically very active I would take a painkiller that evening as a precaution against stiffness and pain the next day. It did help. As Pats and Sue8 have already said - you should try to see or speak to a doctor sooner rather than later - you don't have to stay as you described. I'm surprised that your physio hadn't encountered PMR before - my experience of physios is that they not only know about the condition but are extremely anxious not to antagonise already inflamed areas of my body - but perhaps I've just been lucky.

[janimaths in reply to MaisieB]

I was writing at the same time as you Maisie. You'll see that I am sensitive to Naproxen but will get something from my GP tomorrow. I have just taken some paracetamol and I take them on waking, then my other preds etc., and wait for half an hour before getting up. My physio has experience of PMR but thought my smptoms were different from what she's seen. When I saw her as an emrgency on Monday she was as you describe, and was very gentle over the painful area. Getting up my courage to request that I been seen soon. I realise how busy the GP's are and that the general public will never understand how much they give of themselves in their daily work but I am putting myself first on this occasion. Jani

[janimaths]

Thanks Sue and Pats. I did speak to the on call GP yesterday whose brisk and swift opinion was that it was 'something I had done to my back and to take pain killers' and 'these things take a while to resolve'. (I think of him as the Tin Man from the wizard of Oz). I had an appointment with a new rheumy on Friday whose communication skills were really good - the man I'd seen only once had moved away - and we decided to leave off injecting my shoulders meantime as I was just beginning to get better of the arms. We discussed Ibuprofen, Diclofenac and Naproxen, all of which I had tried before but I can't remember the dose. How lame is that? I don't like taking them as they give me clouds in my head and make me a little hard of hearing, especially Naproxen. Also, although I can be assertive on other people's behalf Sue, I am hopeless about pressing for myself. I will definitely ring the practise tomorrow first thing and ask to see my own GP ASAP. Today, day 5 of the awful pain, it began to abate about lunchtime. In other words it behaved more like PMR than it has since it started. It was great to have some relief and we'll see what tomorrow morning brings. I'm sure if my GP knew I was lying staring at the walls or watching Come Dine with Me she'd want to see me and get some pain killers going so I can get going too, so I'll get past the receptionists for sure!

Jani

[Hidden in reply to janimaths]

Well done Jani,

Hope to hear from you soon.

Pats.

[Annodomini]

My GP said that my back pain wasn't part of my PMR, though in my opinion it's a pretty big coincidence. It happens when I walk, but tends to wear off after a bit. I hope so as I'm going to France to stay with a friend next week and she's a keen walker. Fingers crossed. Shoulders are a bit sore today perhaps as a result of swabbing down my wooden steps in the garden with Jeyes fluid the other day.

[Celtic PMRGCAuk volunteer]

Jani

I have suffered from a couple of bouts of sciatica during my years on Pred, although I do also suffer from a slippage forward of the base of my spine. The pain would start in my buttock and go right down my leg into my foot. Being a very anti pill person, and especially not wanting to add nsaids into the mix with Pred, the only thing I resorted to on each occasion was to don a support girdle and I found this of enormous benefit not only for my spine but it also helped with the PMR pelvic girdle and leg pain.

A physiotherapist gave a talk at one of our recent PMR support group meetings and emphasised that physio is contra indicated in PMR - manual techniques such as stretching, manipulating are not recommended, but gentle massage and heat treatment can be helpful. I don't know whether the inflammation of PMR itself aggravates our spines or the weight gain that often comes along whilst on Pred, but my last lengthy bout of sciatica disappeared after reaching the very low doses and losing a stone in weight, so I guess the loss of fat somewhere released something!

I do hope you get some relief somehow and soon.

[janimaths]

Thanks for your input. It came on a morning when I woke without commanding pain - but bearable pain in the lower back, and there has not been any stiffness anywhere since it began. I walked slowly and gingerly about, but at 10 am, when I had been standing up for about 15 minutes it returned as before, necessitating getting flat on my back and staying still until it later disappeared. It definitely springs into life when I stand, and carries on when I sit if its active. Although the local physio gently pressed all my vertebrae without pain, as did the one at the hospital pain clinic on Friday, I now think that perhaps this is not PMR but something mechanical. There is also numbness at my inner right knee. I discovered that my GP is on holiday and returns on Monday. I have the option of ringing the surgery at opening time on Monday to try to get one of her 3 vacant slots or of waiting until Thursday morning to see her. If I do that, and much depends on whether or not the awful pain returns over the weekend, I will have a clearer picture of my symptoms - what I don't want is to be told to go up yet another 5mgs if I require to see an orthopod. I am learning that my body tells me things and that I must be sure I communicate what is happening and make clear my symptoms. Good advice from your support group physio which I will keep in mind, same as the possibility of a support girdle. My long suffering husband always suffered from scoliosis and said if he took off his brace he would fall onto the floor! I will research one for myself if this goes on much longer. Meantime I have a wheat filled cushion which is heated in the microwave and can place over the lower back area. It'll be another quiet weekend with reading. Thanks again.

[janimaths]

Desperate - I decided to see someone sooner than through the GP practise. On Friday past I made a private appointment with a consultant neurologist who I saw this morning at 11 am. He is sure that my pain is nerve pain from a disc and that the descriptions I gave him of referred pain route, numbness at inner right knee and hip, and the intensity of the pain etc., all point to that. He will prescribe amytripilene (sp?) to target the nerve pain and have the area scanned for the record, but it may not show anything. I am in a better position to resist the upping of pred (would have been up 10mgs in total in 3 weeks) possibly unnecessarily, but am prepared to do so if I feel I have genuine PMR which demands the increase. The Great Guessing Game goes on. The pain started to niggle just after a return flight from Sicily where I was for a week with my family. I had to lug my suitcase by myself on and off carousel,weighpoint, midnight shuttle bus at Gatwick and again 6 hours later after a short sleep. Now I am hoping for a little respite from pain. Yesterday it began to recede a little and today a little more. Here's hoping that whatever it is has released itself a little and will soon clear up. Jani