Worried...new symptoms of pins and needles, muscle deterioration, fatigue, continuing hip problems

[Lyndab62]

2 years plus in to PMR. 56 years old. I'd appreciate some help and advice please. Feeling worried and depressed. I've posted recently about a flare, affecting hips. GP referred me to physio - I didn't think this would help. Physio gave me specific exercises on already sore hips which pushed me into a massive flare. She said I needed to strengthen the muscles, ligaments around the hip joint. I went from 5.5 mg pred to 10 mg for a few days, and then 12 mg which I'm still on after 2 weeks. This increase was agreed with Gp. GPs and physio have both stated there is no bursitis, based on, I think, my ability to bend and stretch hips, good flexibility, no screaming pain on pushing and prodding etc. However over the last month I've had considerable hip pain, burning, needing to apply ice packs, or alternatively lying in a bath for a time. This has now reduced, to left hip feeling uncomfortable rather than painful.

Last week new symptoms...pins and needles in thigh muscles. Comes and goes, can be intense and painful, lasting a few hours. I followed up with my second physio appointment last week and told her of my concerns regarding pins and needles. Her unbelievable response was I should see GP and get stronger pain relief, return to her for more hip exercises!!! I told her my thoughts, and said her approach had caused me to be struggling to walk, increased pain, flare up, pins and needles, had to increase to high dose pred and unable to work (I'm on sick leave now). I saw another, very approachable GP after this and discussed my history and concerns. The outcome is a referral for MRI scan. Oh and my muscles have become very flabby and I feel weak.

Over this weekend I've had continuing sensation of pins and needles in thighs,which also went up to my arms and even my face . I went to out of hours GP on Saturday night as I was so frightened. Reassured me nothing immediately of concern but return to GP, possible nerve problems, vitamin b12 deficiency. For the first time ever I was concerned about being at home on my own! My lovely sister offered to stay.

Up to going to physio a month ago and despite hip pain (which always returns when I reduce to around 6mg pred), I had been quite fit, able to walk and do Pilates type exercises. So I don't believe I had specific weakness in hip muscles tendons ligaments.

I'm rather worried about all this. I've had a relatively easy time with PMR up to this last 2 months.

Thank you so much.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear about recent problems, can’t give definitive answers, but just some thoughts.

I would suggest a combination of causes really -

At only 2 years in, your PMR is still very much alive, so maybe 5.5mg was too low a dose - although if just that, the increases in Pred should have worked,

Your hip pain may be myofascial pain syndrome or referred pain - and an over enthusiastic physio has worsened that - a massage or acupuncture may be alternative therapies to try,

Although unlikely as both hips are affected, a scan (good to see you’ve been referred) may be able to rule out possibility of arthritis,

At 5.5mg you are at a level where your adrenals may be struggling to work correctly, and although it usually manifests itself in fatigue, it can also make you feel rotten.

B12 deficiency could account for numbness and tingling so please get checked as soon as you can.

Please keep us informed.

[Lyndab62 in reply to DorsetLady]

Hi, thank you for your reply DorsetLady.

Regards the reduction of pred - on reflection I should have stayed at 7mg for a few weeks, which is where I felt really well. 6.5 ok, 6 hips not as good though I didn't have fatigue at this level. It's a shame to have to have gone to 12mg, when perhaps I could have avoided it.

Hips - pred increase seems to have 70% settled the burning pain in both hips, leaving just the left hip niggling now and pins and needles varying from nothing one day to intense another day and anything in between. Would MRI show bursitis, which is what I've kept suggesting to GP and physio?

The weak thigh muscles are so apparent now, both visibly and physically not able to walk much and I daren't risk any more pain.

The fabulous GP who listened isn't in this week... I'd rather see him. I think it should be ok to wait until next week to discuss the b12 thought.

I hope you're feeling better and I appreciate you replying when you're not too good yourself.

Sorry for the long reply! Lynda

[DorsetLady PMRGCAuk volunteer in reply to Lyndab62]

Hi again,

No problem- an MRI scan should show any bursitis - and/or other things as well.

It was assumed I had bursistis in my right hip for some time, but it actually turned out to be arthritis. Hope yours isn’t! And you get a scan and results soon.

[Constance13]

Read up about Neuropathy. I suffer with this and your symptoms do seem to come close.

[Lyndab62 in reply to Constance13]

Thank you Constance. I have googled neuropathy...scary! What do you do for it?

[Constance13 in reply to Lyndab62]

Cross my fingers and hope it will disappear!!

I don’t really want to take any more medicines so I struggle. It’s not easy as I have PMR, Poly Arthritis and Poly Neuropathy. 3 Poly’s are at least 2 too many!😟

[SheffieldJane]

It’s a vicious circle isn’t it? The pain and worry makes us depressed and the depression makes the pain and worry much worse. We’ve all been there. So glad you have one of the angel doctors, this can make all the difference. Happy that the MRI scan is booked, that will spot anything, if there is anything to spot. Glad for you that you have a sweet sister who will stay with you. Here’s hoping that you get over this bump in the road quickly. 🌺

PS. DL says the other bit so well too.

[Lyndab62]

Thank you for your kind words! I have a lovely family and friends, people are ringing and calling round, but I still spend long hours on my own overanalyzing every new symptom and getting emotional and worrying.

[PMRpro Ambassador]

Honestly don't know what to suggest - except never see THAT physio again! DL has said most of what I'd say so I won't repeat it.

Obviously your lowest dose that manages the symptoms is 6.5mg, maybe 7mg. I think it could well be bursitis - mine doesn't necessarily result in stopping me doing things, if I do nothing it doesn't hurt!! Walking for more than 30 mins does though! Higher pred does make it better.

MRI won't necessarily show bursitis, just if there is swelling - but it will rule out the other possible options for hip pain.

medscape.com/answers/87169-...

points out MRI won't show trochanteric bursitis - which is the most likely.

Nor will it show muscle problems - and I'd suspect that myofascial pain syndrome is probably contributing to the problem and may well be the reason for the pins and needles too. If the piriformis muscle is tight/spasmed it can cause sciatica:

spine-health.com/conditions...

If other back muscles are spasmed they can affect other nerves: myofascial pain syndrome can form pairs of trigger points in the shoulders, about rib level and low back. Sciatica is due to low back problems, in the shoulders can lead to nerve pain in the shoulders, arms, head and neck. I found Bowen therapy very useful when I was in the UK - here our physios are rather better at dealing with back problems, so is the Pain Clinic!

spine-health.com/video/myof...

Muscle myopathy and a neuro problem are possible answers - but obviously the OOH guy wasn't jumping to those options. The MRI will provide some answers there.

It's easy to say don't worry - it's default position when you don't know.

[Lyndab62 in reply to PMRpro]

Many thanks PMRpro. Homework tonight is to read the links!

After googling the piriformis musle, I have gently massaged this with a tennis ball against the wall and it felt sore, tight and lumpy. I now have buttock pain again! Suggests there's a link ?

It's all quite complicated, how nerves, muscles, swellings etc are all linked and cause problems, which is why I bitterly regret doing those physio exercises. I think she should have looked deeper into the causes of my symptoms and not just printed off the sheet of exercises.

Hope you are feeling better, I read you had needed to increase your dose again. It's no fun this illness

[marigolds]

I also learnt my lesson with the physio with my hip going worse. I told them I just wanted my muscles sorted but the physio insisted I did the excersizes. Are they not trained to massage muscles? I did let them know with a couple of emails. I don't think they are encouraged to do it for some reason.

[PMRpro Ambassador in reply to marigolds]

Ours are! My physio referral is predominantly for massage/manual mobilisation of trigger points/muscle fascia release.

[Lyndab62 in reply to marigolds]

It seems standard for NHS physios to hear "hip pain" and print off a sheet of exercises! I think my leg and buttock muscles are lumpy and sore, but she didn't assess that. In fact she pretty much disagreed with everything I said, including me saying "the exercises will make my hips worse, they're already very sore" .

I don't know why they don't do any hands on stuff either.

Did you get sorted in the end?

[PMRpro Ambassador in reply to Lyndab62]

Did she examine you at all?

[Lyndab62 in reply to PMRpro]

She did yes, I was lying on my back then front. It seemed mostly to assess my flexibility and strength and she said it was muscle/ligament or tendon weakness and not bursitis. My leg strength and flexibility were ok on the first assessment but I wouldn't let her touch me the second time I went. I would have struggled even to get on the table by then

[PMRpro Ambassador in reply to Lyndab62]

She didn't examine you standing? My pain specialist looked at me standing, bending, and could see some of the problem even before she started touching and prodding muscle groups.

[Lyndab62 in reply to PMRpro]

AHH yes she did look at me standing and bending side to side, forward and backward also, sorry! She just seemed sure it was "weakness" in the hip area. She didn't prod muscle groups.

[PMRpro Ambassador in reply to Lyndab62]

I don't think that is enough. But I do have a superb physio service.

[Lyndab62 in reply to PMRpro]

Please can you book me in with your physio?!! I'll book a flight 😁 Seriously, I might try and find a good private one here.

Glad you have confidence in yours

[PMRpro Ambassador in reply to Lyndab62]

I met some very good private ones in the UK - and they have the time to do hands-on stuff which, to be fair, NHS staff don't because they have to spend time on emergency rehab. And private ones sometimes appear to know what they are doing with backs!!!!

[Blackcat1M]

Oh heck I am due to see a physio too, as my doctor referred me, I am not happy about this as I have heard befor sometimes physio can do more harm than good

[PMRpro Ambassador in reply to Blackcat1M]

You sit down with them first and find out what they know about PMR and what they are intending to do. Then you reassess - it is possible they do know what they are doing. I have had some excellent NHS physios.

[borednow in reply to PMRpro]

I've started doing this now. The results are quite astounding. Locum very much on the ball, Clinical Pharmacist - a very young man - said he knew about PMR but with subtle questioning, knew basically not a lot. So I nicely put him right! And he thanked me. But the one person who was amazingly knowledgeable was my new optician (recommended very quietly by the Locum - she said she wasn't supposed to do that) and he is excellent. This PMR lark and the glorious people on this forum have given me the courage and knowledge to sometimes question professional people's suggestions. Thank you very much!

[PMRpro Ambassador in reply to borednow]

My optician in Scotland was amazing about all sorts of things. I sent someone from the lupus forum to him instead of hospital and she was also delighted. But he is about my age - and now apparently almost retired! I gather he has trained his replacement pretty well though!

[borednow in reply to PMRpro]

New optician 34 (I asked him) so I should be OK for quite a while. Actually, I should be OK for as long as I need to be as I am considerably older than he!!

[PMRpro Ambassador in reply to borednow]

Unless he is rude enough to decide to move ...

[tangocharlie]

For trochanteric bursitis in the hip my GP pressed various places and asked if it hurt, he got it pretty spot on and I yelped with pain. A steroid injection sorted it out quick and easy. I think ultrasound is usually used for spotting these things, it was for bursitis in both my shoulders. Bursitis seems common with PMR, I wonder why?

[PMRpro Ambassador in reply to tangocharlie]

Because the bursae are preferred sites of attack of the autoimmune disorder that causes the symptoms we call PMR.

clinexprheumatol.org/articl...

[Lyndab62]

I think that's why no one thinks it's bursitis, cos no obvious pain like you had. For me, more of an intense burning and soreness spreading from hip outwards. It stops me moving properly. Eased off now but I'm doing very little.

It's hard to know what's PMR pain and what's something else.

Thanks

[Berylholley]

Re above my hip is much better now but I can't walk very far. Am having to use a 4 wheel walker for stability. I am down to 4.5mg and am trying to reduce by splitting dose into 3 something I read on here put on by Sheffieldjane can't remember the thread name. Hope you improve soon. I have had a lot of trouble with muscles,

[jane57]

Hi Lyndab62

I haven't posted very often, but I do read posts of interest and yours rang very true to my condition. I am into my 5th year of pmr and have been significantly helped along the way by this amazing forum and the expert advice offered by dedicated contributors.

I too suffered with the hip problems you described right from the start and I was lucky enough to be referred by my Rheumatologist to a specialist Physio who would only litterally help me with the most gentle of excersises and following an Mri 3 years on, It was discovered by oedema fluid presence that I have tears each side where the medium gluteal muscles attach to the Troncanteric bones. Referred to as Gluteal Tendonopothy. For this I am offered bilateral fluoroscopic ultra-sound guided steroid injections. I am under an Orthopaedic Surgeon who will give me these bilateral injections 3 times a year. We have talked about surgery, but it is in his opinion at best a 60% improvement forecast and along with the pmr would be a difficult recovery. (No weight bearing at all for 6 wks) We will decide together if we absolutely have to in the future. As your symptoms seem similar to mine, I just wondered if this is something you could be suffering with. It is a nasty condition which is extremely painful exacerbated by inflammation and pmr may have contributed to it along with wear & tear or even steroid use. I have learnt that careful exercise helps, definitely the injections and maintaining an in range bmi weight is important especially if operations are my only option in the future to keep me mobile. its worth mentioning also that because of the trauma in that area and inflammation the bursa on each side becomes painful too. Sorry if this is a tad long winded but it took 3 years to get to the bottom of my pain and immobility due to this and I also had to give up work. I found myself yo yoing with the oral steroids to deal with it and got nowhere. I am currently at 3mg on the dead slow nearly stop method. I sincerely hope you get to the bottom of your pain and that its not what I have but the symptoms are so similar I had to post this for perhaps your Dr to consider? Kind Regards Jane

[Lyndab62]

Thanks for your post Jane. I've read it a few times. Sorry to hear you are suffering but hopefully you are managing better now you know what you're dealing with. It might be worth me asking for a referral to a rheumatologist, but from people's experiences on here , it seems a good one can be invaluable but if not experienced they can make matters worse.

I really hope I don't have gluteal tendonopathy. From what you say this would show up on the MRI scan?

I've now booked to see a private physio tomorrow, so I'll see what he thinks.

Thanks again for taking the time to reply. Lynda