Is Ileotibial band syndrome a symptom of PMR?

Since I was diagnosed 3 yr ago I have always had pain and tenderness down the outer thigh. Recently the left knee has become very painful doing stairs or trying to squat (with great difficulty). The outer left knee feels like a burning sensation when I touch the skin, it is driving me mad. I've always assumed the pain down the outer thigh is part of my pmr but it has never been this bad before. Hips are also very tender around the trochanter area. Reduced from 8.5mgs to 8mgs yesterday, but the knee pain has been there for a few weeks. Does anyone else get pain in the outer thighs, and if so what helps?

15 Replies

  • The outer thigh pain I had was trochanteric bursitis and responded to cortisone injections - and nothing else. It increased through the 5 years of PMR without pred and then took about 6-8 months to fade on 15mg pred. Then it came back when I had the BIG flare 4 years ago - which was effectively due to no/not enough pred because Medrol didn't work for me. It got worse and worse until I asked the hospital doctor at an a/f checkup what painkillers were OK with everything else I take - "Nothing really" she said! And rang A&E to ask if a duty orthopod would give me cortisone shots there and then. They did and it worked well, but I needed another pair of shots about 3 months later and that was enough. I've had a single shot in one hip since when it started grumbling.

    It hurt all the way down the side of my thigh and I had the same sort of tender, burning sensation to touch. I did have pain down to the side of my knee - and stairs were hell.

    Iliotibial band syndrome is an overuse thing - stop the running/cycling! ;-)

  • The pains you describe are identical to what I have had for the last 3 years. The burning sensation is new. I used to have a monthly massage and she always said that the outer thigh area was tight and possibly inflamed.

    I'm hoping to see Sarah in January, but have not received my appointment yet. She has suggested injections into the areas showing most inflammation. She wanted to do another PET scan, but surely the areas with most inflammation, is the areas where I gave most pain.

    I reduced my Pregabalin from 300mg twice daily to 150mg twice daily, as I felt it was contributing to the weight gain. Unfortunately since reducing the head and tongue pain have returned, along with scalp tenderness above right ear. So think I will need to return to higher dose.

    Hope you have a lovely Xmas, I'm off this year 😁, although working new year, when mum is down from Scotlabd. Oh well, can't have it all. Xx

  • "Oh well, can't have it all." But it would be nice occasionally wouldn't it! Where's your mum from?

    I used to have the same sort of feeling all over the top of my bum, below belt level I suppose, the skin really felt tender to touch, like skin feels in flu.

    Maybe she wants to see where else there is inflammation? I know people with arteritis who didn't really have pain, just were ill with fairly typical GCA but the inflammation looked like a Christmas tree when "proper" imaging was used.

    You have a lovely Christmas too - ours will be as exciting as ever! Nat is working in her new job (social care) on Christmas Day I think. Esca is working Boxing Day night so she'll be off. It really isn't worth the effort of coming over though - I'd hoped to persuade David we could go away with the camper further south but he doesn't seem to be biting, not warm enough at 16/17C.

  • My mum is from Glasgow, we lost my dad last year, so she finds being home new year difficult, as it has always been a family celebration. Looks like we are in for a mild Xmas at 12 degrees.

    Emailed Dr Mackies secretary to chase for appointment, so hopefully not too long to suffer on.

  • They categorically said that we won't have a white xmas! Poor tourists who come for the snow - not even anything decent up the mountain. The freezing level later this week is to be above 3000m again - soggy pistes which will then freeze. Lovely!

    It is, however, absolutely glorious - blue skies and sunshine if bitterly cold. But we tend not to get wind so it's OK - as far as we're concerned these days it can stay like this to February and then it can warm up properly :-)

  • Hi there Runrig, I have just had my Rheumy appt., unfortunately, didn't get to see Dr. Hughes this time but the Dr. I saw thought my right side pain was trochanteric bursitis and has given me a shot there. I am hoping it will work! My pain has been getting worse in the last 2months- all over my hip, lower back,groin and mostly all over my thigh. I mentioned myofascial pain and it looked as if he had never heard of it! The good news is that the pain in both knees has got a lot better and that seems mostly down to losing 2.5 stones. There is still more weight to lose but I will keep going and it will all hopefully get better no better. Have a good Xmas- I'm trying not to dwell on the fact that this is my 4th Xmas with PMR and that I have felt worse every year of it!

  • Good news about the weight loss, well done Suzy. How did you manage it?, as I'm struggling, think I've put a stone + on since we met for coffee. Desperately need to lose it. I have started using a set of 12 toning tables, which have helped tone my stomach. I try to go swimming twice a week after my long days at work. Helps destress 😃. I'm glad your knees are improving, and hopefully the injection in the hip works 😃. Have a lovely Xmas when it comes 🎄🎉

  • Oh well done! Like you I still have a fair bit to go but I'm totally stuck. It will come (or go, however you want to look at it).

    I know how you feel about the 4th xmas with the unwelcome guest - 10th or 11th with PMR I suppose for me - for the first 7 it was all downhill, since then it has looked up a lot.

  • I had a lot of pain down the whole length of my outer thighs for several months early on, but thankfully it has since disappeared. The two things that helped me were hot baths, or laying down on the couch, bed or floor with my legs up the wall. Good luck, hope you find something that works for you!

  • I've had bad pain down the outer part of my legs. I saw a physio.

    It's eased off a bit lately but now the shoulders are more problematic.

    I also increased my thyroxine under rheumys orders and that has helped too. But not all of you will have an under active thyroid.

    Hope you all have a terrific Christmas. As a clergy person this is a very busy time of year. ( but nice)

  • Had my thyroid levels checked not long ago and they were fine. Hope you have a lovely Xmas x

  • I have experienced the same pain you are describing. Thought the IT bands were the problem and tried massage which only made things worse. Tried acupuncture with almost daily frequency for a week and that helped somewhat. The pain however was bilateral and became worse into both knees. Both knees were very stiff and movement reduced the pain and stiffness. Pain extended into the calves and thighs. So bad at one point touching hurt and rolling over in bed was a chore of pain. 15mg of prednisone made a huge difference. From what I have learned if movement helps abate the symptoms it might be PMR.

  • I have had similar outer thigh burning and knee pain while also having PMR. However mine was related to muscle weakness in the flute, especially the gluteus medius. It improved greatly with physical therapy which would seem to mean it wasn't from the PMR.

  • Yes, have been battling this horrendous pain for about three months now. It goes from the trochanter area down the outside of the thigh into the knee then down the front of my lower leg and the pain ends in the middle of my tibia. Nothing relieves it but it does appear to be improving very slowly. Doc says it is not PMR, x rays say I have severe Osteo Arthritis in both knees and the right hip joint and runs into the adductor muscle, the pain of which is hideous and makes my cry out, even in shops if it 'attacks' then. Odd that it was all so sudden and no offer of treatment. I am on 14.5 mg Pred daily, trying to reduce. Bad Doctor management initially, before I found this site, ensured that I am on a roller coaster of Pred, up and down, up and down, but am determined to win this time!

  • The pain from hip to knee and then across knee and down lower leg is what I had when I drove. I had a replacement knee for, osteoarthritis, and it has been fine since. When it was bad I could only drive for 20 mins without a break, either as driver or passenger. PMR is still bad but my new knee is on the mend. :)

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