I was diagnosed with PM over 2 years ago. I was 64 at the time and it hit me like a brick. I went to bed feeling like a young woman and woke up feeling like a senior in a lot of pain. It took a month before I was properly diagnosed and put on Prednisone. I was on Prednisone for 2 years while gradually decreasing the dosage strength as recommended by my specialist. I was off prednisone by last October and did not feel any pain at first but it gradually returned. I can tolerate the pain most days and I do not want to go back on Prednisone which I am told is the only drug that can take away the pain.
I stared to experience numbness in my upper leg (between knee and hip) which, although not terribly painful, it prevented me from sleeping, etc. It felt like it had gone to sleep. I would massage it and put heat on it and gradually I could get to sleep.
This symptom has now gone but I am experiencing a "funny" feeling in my head which at times feels like blood or liquid rushing down my skull. At other times it feels like little bugs running around. it is not constant but a few times every day. Naturally I am worried and want some answers.
Because we all shrink as we age, I wondered if this was causing a pinched nerve in my back or base of my skull so I was sent to a orthopedic surgeon. He checked me out and said that he did not think so and explained that sometimes the protective vertabrae around the spine shrinks with age and can cause pressure on the spine.
My concern is that the leg and head feeling are only on my right side. All this to say, I originally wanted to know if there are others out there that basically still have the same pain although less severe after your doctor says you are well i.e. you blood levels are back to normal. The pain defnitely mimicks the original pain but is tolerable. My worse is in the groan area when I get in and out of the car. Help, please. Am i alone in this situation.
I am scheduled for a Catscan next week to see if there is anything to be concerned about.
Hi linda, I'm so sorry to hear that following your long journey with PMR, there's now something new causing you distress. I'm sorry but I'm not medically trained so cannot help you at all other than to say that if you are now feeling PMR pain again the likely chances are there is still a bit of the auto immune condition there which will need prednisone again and if I'm right if you get on top of it now you may not have to go straight on such a high dose. And low doses do not give you such side effects if that is why you don't want to go back on them again. I can't help you with the leg and head problem but at least you're booked into having a cat scan so the drs are onto that. I know that Eileen throughout her 10 plus years of PMR has never had raised blood levels so blood results cannot always be relied on. I would think about getting back on the prednisone as I think the condition is still there lurking. Regards Christina
Hi Christina!
Thank you so much for taking the time to write and for your empathy. Because I am pre-osteo, I am trying to stay off prednisone as it drains calcium from the body as well as cause eyesight problems. Therefore, I am really hesitant to restart taking prednisone as long as the pain is bearable (which it is most of the time). I have also heard that the pain from PM usually disapates over time
unlike Fibromyalga.
I was just curious as to whether others still experienced pain once they were off the drug. It sounds like there are all sorts of issues depending on the patient.
I am anxious to get the Catscan results next week if only to ease my mind. Thanks again for your input.
Linda
Linda...im sorry u r having complications...i had the exact same feeling in my thigh....as soon as i started the pred it went away in about 2-3 days..it was one of the main things i noticed...i was using a long belt to lift my legs in and out of the car and in and out of bed...the pain was so bad in my hips and groin i was nearly a
cripple...when i rolled over in bed i did so in tiny little degrees of movement...i could stand long enough to make one side of my bed and had to sit...now that im on pred i can do almost everything without pain...i know pred side effects r bad but im grateful to have it and i know this pmr will be done some day...everyone has to take what medications they feel comfortable with so i cant advise u to take pred or not to..all i know is that i dont want to go back to a life of sitting in a chair with the dread of getting up
Yes of course you are anxious about the other issues that have risen and i hope all the tests prove negative and all is well. I am aware that for at least a year after finishing prednisone our bodies readjust, so I don know maybe all these issues could have something to do with that? However, please do not delay taking prednisone if you should have a flare up, there is medication for bone wastage but as you know there is nothing that can help the pain of PMR only prednisone. Christina
Thank you so much for your reply. I feel better to know that I am not going crazy or not alone in this. I do need to do some soul searching to decide whether or not the benefits outway the risks and pain.
Thank you again.
Thanks Christina! You are right. I do need to give this some thought for sure and then move forward. 
Thanks. Linda
Hi Linda. Sorry to hear of your problems. I am still on 5mgs pred and not at the end of my PMR journey yet. I just wanted to say that I have experienced the liquid rushing down feeling on the left side of my head at the back. I had a headache at the time. It felt as if someone had pulled the plug out of a sink type of feeling, and afterwards I felt a feeling of lightness and clearness like the headache had gone. It frightened me a little but it hasn't happened since. I'd also like to say that I have read that hip pain is usually felt in the groin, but bursitis, that is inflammation of the hip joint is felt on the outside of the hip and thigh. I do get this and it wakes me up at night. All my PMR pains are worse on my left side for some reason. Hope this helps. Angela.
Thanks Angela for your response. Did you only have that liquid rushing down feeling only once? i have now had it for a couple of weeks every day, numerous times a day. Thank you.
It was just the once Linda and it was last week. I've just Googled gushing water inside back of head and there's a lot of answers there. It could be inter cranial nerves or sinus drainage, amongst others. It's certainly a common thing and one which alarms many people. Have a search online and see if it puts your mind at rest, or have a word with your GP. Please let me know if you find anything out. Angela
Hello Linda
i am so sorry to hear that you possibly have PMR symptoms again. I just wanted to say that my understanding is that allowing the inflammation to continue unchecked by Prednisolone is likely to do damage to your body and can lead to just as serious health problems as Prednisolone can do. I also thought that if you go back on Prednisolone and the pain goes you would have confirmation that it is the PMR. And as it is not so bad at the moment, perhaps you would not have to be on it for so long.
I can can only say what I would do.
I have some bone thinning and so have been prescribed Aldreonic Acid and of course I take Vit D and Calcium to protect my bones.
Hopefully Eileen or MrsO will be along soon to give you more definitive advice.
Sheila
The pain you describe in the groin could well be trochanteric bursitis - I know someone else said bursitis pain tends to be on the outside but it can also be felt into the groin. The best way to deal with bursitis is local cortisone injections - it may take a couple to really get the inflammation uder control. Steroid injections don't have the same risk of side effects as they don't last long in the body.
Thank you Eileen! This is a possibility that I will not rule out, for sure!
However, groin pain is extremely common with PM as are the other symptoms such as pain in the shoulder joints that I am presently experiencing, Some days are not that bad while others it is extremely painful making it difficult to get in and out of the car. I do believe that this is the beginning of rheumatoid arthritis although I have never been told so by my doctor.
I also feel that a lot of times we are on our own in this area and that doctors are truly baffled by this condition. We are the pioneers who, through these discussion groups, can hopefully help one another. Doctors do not know the cause nor have they a cure. I feel that Prednisone removes the pain but does not treat the condition. These are only my thoughts on the issue. Thanks Eileen!
Groin pain is common in PMR because part of PMR is often bursitis in shoulders and hips. Some doctors are beginning to consider whether the specific things should sometimes be dealt with for themselves - as in a local steroid shot.
I too have the rushing feeling in my head, also the bursitis on outside of hip and thigh, and in groin area.
How often do you get the rushing feeling in your head? I have it every day (on and off) periodically during the day. It does not keep me awake so I don't know if it happens during the night.
What does your doctor say about it? As I said, I am having a CatScan next Tuesday and hope to get to the bottom of it.
My hip is troubling me but because I have other health problems, I am not overly concerned. I suspect that I will have to have a hip replacement as well as a knee. Getting older is not fun!!!
Thanks for responding to my concern and sharing your problems!!
Linda