GREATER TROCHANTERIC PAIN SYNDROME-PLEASE HELP.

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Hi all. I've had GTPS for about 3yrs-started getting pain all down my right side from hip outer thigh,knee, calf especially when resting. Had several blind steroid injections, helped a little. Had a guided ultrasound steroid injection at various points in right hip & lateral right knee where fluid was found on ultrasound got 100% relief for a couple of months but it took my local healthcare provider  3mths to organize physio by which time i was only able to attend 2 sessions as the pain had come back to a 9/10 level. it wakes me every night several times causing broken sleep & lots of tossing & turning to get away from the pain. Its like deep bone pain is how i would describe it.

I had another guided ultrasound steroid injection 3wks ago, & was hoping for the same relief i got last year from the 1st time i had it done. i was injected at several points in the right hip again, but not the outer knee as the consultant said he could not see any fluid there this time.  The pain  relief has not been the same this time & again i am still tossing & turning being woken several times a night with the pain all down the right side. I am now also getting minor pain down the left side which the consultant said often happens in GTPS due to the body compensating for the bad side. Also since this injection, the pain in the right lateral knee is worse???

I had my first physio appt yesterday since this latest injection. He said the knee pain indicates inflammation with the ITB(iliotal band) & generally all the pain is related to the gluteus muscles & tendons. He has given me some exercises to do & i see him again in 4wks. He also said it can take upto 8wks for steroid injections to give relief/settle down, but as I got 100% relief straight away the 1st time last year, i feel disappointed & worried I will not get any relief this time.....He also said GTPS is often something that doesnt go away & is often dealt with by managing pain as surgical procedures do not give good outcomes mostly. I cannot take any anti inflammatory meds as i also have colitis so pain relief is limited for me. I've tried turmeric, but it gave me acid reflux!!!

I would like to hear from anyone with similar experiences , any comments/advice greatly welcomed.

Thankyou in advance. xx

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  • Posted

    I’ve been dealing with trochanteric bursitis for about a year now. And seen many specialists for it. In general steroid injections seem to be an effective method of treatment for the pain. For my case the orthopedics said if the injection worked then it confirmed diagnosis and means they got it in the correct location. Mine however is so severe the mere injection of additional fluid into the area causes extreme pain.

    However for GTPS caused by bursitis, the pain would stop at the knee and go wouldn’t go any further down the leg. The IT band doesn’t extend that far. Everyone’s gonna give you advice and suggest trying to get more diagnostic work down. I finally had to get an MRI to see what was really going on. In my case the Pysio therapy aggravated the condition.  

    I think if you got relief from the first one then it’s a good sign. Was the 2nd one injected into the same spot? Did they use the same combination of drugs? The same amount of drugs?

    In my case one classic combination of drugs gave me noticeable mood side effects while the second injection I received did not.

    For sleeping I only sleep on my left side cause of the right hip pain. I have heard of using a hemmeriod pillow to lay your effected hip into the center of when you sleep on the hurt side. 

    Hope some of this information helps.

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    • Posted

      Hi Victoria. Thankyou so much for replying - really helpful.  I am sceptical about starting the physio exercises for the very reason you said-more diagnostics. I have never had any mri scan on either the knee or hip-just an ultrasound which showed enthesopathy to the gluteus medius & minimus on insertion. with the first guided ultrasound injections done last summer, the consultant said he found fluid at the tensor fascia lata from hip to knee (outer), & said i have gluteus medius tendonitis/enthesopathy & trochanteric bursitis. What worries me about starting the physio exercises which are designed to stretch & strengthen are what if there are any tears? Surely physio would make this worse? What do you think? In my area we have  muscular skeletal service (nhs), do you think i should ask them to pause the physio & ask to talk to the specialist practioner about having an mri scan to make sure there are no tears 1st?

      And also I was thinking myself before you said it in your post to maybe try & get hold of the consultant that did my most recent injections & ask if they used the same combination & amount of drugs? Do you think this would be a good idea?

      I had no mood problems like yourself with any of the steroids injections, but a bonus has been this latest injection has greatly reduced the chronic neuralgia in my right shoulder!(consultant did say it was systemic).

      I am going to buy one of those donut cushions to plant my hip in when i sleep - that's an excellent idea, thankyou.  xx

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    • Posted

      I have been having lateral hip pain for over 20 years. At first, it was only when I extended my leg out to the side, like rollerblading and line dancing. I gave those up and was ok most of the time. But now when going for a walk it will start being painful. Not excruciating, more dull and achy.  I've seen 3 ortho Drs a surgeon and pain management. Yesterday was my first time seeing the 3rd ortho Dr. He said he suspects bursitis, but when he pushed on my hip, though it hurt some, not horrible pain. He then injected lidocaine for diagnostic purposed. That didn't help at all and actually made it worse.So painful that it was all I could do not to cry. I also have pain at the very top of my butt on that side and sometimes have groin pain that wakes me at night. What do you think he will discover from the lidocaine injection? Any suggestions on how to get relief. X rays show no arthritis. I am supposed to start PT on Tues. Thanks.

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  • Posted

    Sorry for such a late reply.  I just had an arthroscopic surgery Monday to remove my bursa and make a window in the IT band.

    Yes, in my experience I would go as far into diagnostics as possible. I had ultrasounds done as well and it never showed the bursitis. If its tendonitis, then the therapy could help if they know which one, if its tears. You'll be wasting your time. 

    Also yes to checking with the first injection. For instance the first time they put 30mLs of fluid into the joint. My most recent orthopedic said the physical pressure of that much fluid into an already ready to bust tissue caused the increase in pain. They can do much less amounts of filler and just the steroids and also put different steroids into the cocktail.

    Again, apologies for the late reply. Also use heat for the IT band area when its super achey and ice for the trochanter area at the hip. If you can do daily doses of paracetamol along with naproxen. I found sometimes if I stay on top of the anti-inflammatories it helped the flares ups be further apart. 

    Please let me know if you need anymore advice. 

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    • Posted

      Hi Victoria.

      Hope you recover well soon from your op & are controlling the pain well.

      I have a physio appt next thursday, & have not been doing the physio due to my worries about a tear & awaiting your advice on pausing the physio/asking for more diagnostic eg mri to see if there is any tears as i don't want to make tears worse with physio!! (no problem with your late reply btw!!). I think that's what i'll do next thursday-ask the physio to refer me for mri or the relevant specialist to refer me - it all takes so long the beaurocracy of who can do what doesn't it?

      I can't take any anti inflammatories due to keeping colitis under control, so have to rely on pain gels or cocodomol when needed. i got the donut cushion but its hard to stay put on it in bed as you drift into sleep & wake to find it elsewhere in the bed! but have ordered a different cushion with a dip in it to actually place my hip in to keep me more in position.  In desperation some nights i have taken a long acting ibuprofen 400mg, which helps a bit, but does upset my tummy the next day, so a double edge sword.

      I might try putting a hot water bottle under the outer knee to help with pain in bed; its so hard to get away from my natural sleeping position of sleeping on the affected side when you've slept that way for decades!

      Thankyou for all your advice & will take you up on your offer of more advice as things progress.

      Take care of yourself while you recover, & let me know how your recovery goes. xx

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  • Posted

    It is a total pain in the butt trying to get to the right diagnosis when you're getting bounced around between people. It took 2 months for me to get a doctor convinced it was more than tendonitis to get an MRI. 

    Sorry the cushion didn't work! I hadn't had the chance to try it. I had to basically wall myself in with pillows so I wouldn't accidentally flip onto the side with the bursitis. I mean the pain will wake you up in an hour or so, but why aggravate it?

    Does your pain come and go? Mine was always fairly constant but did experience notable flare-ups if i sat for a few minutes or bumped it wrong. I speak in the past tense prematurely (hoping this operation did the trick!). The surgeon said it would be a few weeks before I'd tell if it worked.

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    • Posted

      Hi Victoria.

      How are you now a month on from your op hun?

      i went back to physio & he persuaded me to try some different exercises, but i now have a pelvic pain problem (gynae issue suspected) so cant do the damn exercises!!! huh! just taking pain killers at present. the pain in my hips is now both sides but the right side worst & yes i do wake up every night several times tossing & turning to try & get comfortable again. I've tried the pillow barricade like you, but unconsciously i just move on to them or throw them out of bed during the night!!!

      I hope you are getting better & hope to hear from you soon with good news......

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  • Posted

    Hey...

    I'll probably disappoint, you but I've been having some complications from the operation. I was doing great healing the first 2 weeks. I got rid of the crutches and started walking more normal. Was working on exercises with the physio. And the pain was pretty limited to a surgical pain, even when I sat for a bit.

    Then I had to move out west for Vet school and basically am back to being a cripple now. lol. l climbed a ladder to help tie something to the top of the car and after that, the pain never settled down.

    DON'T CLIMB LADDERS, GO UP STAIRS NORMALLY OR WALK ON AN INCLINE.

    Anyways the surgeon said since it was starting to feel better initially, that I've probably just irritated the crap out of that area and thats why its swollen and excruciating. He thinks it would be too soon for another bursa to have grown back and doesn't think I would've torn anything since all the tissues looked fine when he was in there.

    So 3 weeks ago was that ladder business. And now I have class 8 hours a day 5 days a week where I stand the entire time since the sitting is insanely painful. I hope it's just going to be a LONG healing process now since Im not able to go on bed rest. 

    Last week the surgeon prescribed a pack of prednisone for me to see if it'll help the swelling- didn't have any effect.

    I ice as much as possible during the day and stay hooked up to my water cooler hip thing at night. The pain is immense I've skipped a few classes and am very behind in my studies.

    For pain I managed to have a primary give me Tramadol, northripyline and oxy (for the really bad days).

    I can also only sleep on my stomach anymore. Like you, my left hip has the bursitis now from laying on it for a year straight. I had the surgeon put a steroid injection into that hip to see if it would help (it didn't, but no surprise there). Try to barricade!! I'm thinking about getting one of those foam wedges they use for old folks in the hospice to keep me from rolling. 

    Have you found any times where you weren't in pain (or relatively minimal pain)?

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    • Posted

      Oh Victoria!!

      You poor thing.....it must be soul destroying after going through the op & then having complications & MORE pain after. I know when i had my most recent steroid injection my optimism of pain free nights was so built up as the injection prior to that gave me a few months of total relief, & when that relief didnt come this time i was so disappointed, so i can imagine how you feel after the more radical step of surgery.

      I'm currently on a 5mg per hour morphine patch since last thursday for the suspected gynae pain in my left pelvic area & its not doing anything for that pain & I'm having an urgent transvaginal ultrasound a week today(ughh) to see what's going on. tried supplementing with cocodomol which helps for about 2hrs reduces pain about 25%, so getting my hubby to take me back to gp tomorrow to see if i can double up on the morphine patches. I feel spaced out as it is on the one patch & haven't been able to go to work since friday. however, it has helped with the hip pain at night & i get about 6hrs pain free sleep til it starts to make me toss & turn again, but also the morphine is probably making me sleep deeper. i wouldnt use it continuously for the hip pain though as i feel like a zombie.

      i was looking on the b--ts website for pain relief, & I'm thinking of trying a cordless tens device as i just cant get my sleep position right unless i slept in a coffin!! have you thought of/know about that option?

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    • Posted

      oh god. what's going on with the pelvic pain??? thats horrible i'm so sorry that's happening now too.

      A new doctor where I moved to prescribed an additional medicine to increase the effects of the painkillers. It gave me seizures... so I stopped that medication obviously.

      I tried tens unit before...didn't seem to do much of anything unfortunately. 

      Let me know how everything is going!! 

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