Gluteal tendinopathy - endless pain - losing my mind
Has anyone else dealt with this:
I'm now up to 5 months of daily pain, the the last two weeks have been the worst. I'm totally losing my mind.
First diagnosis was L5/S1, with disc pressing on nerve. I had cortisone shots, then an epidural. Not much relief, although with time the L5/S1 pain seems to have subsided. I've been doing physical therapy for almost the entire time.
For the past two months, increasing pain in left buttock and often sharp pain in left hip area. Diagnosed with piriformis syndrome, new MRI shows gluteal tendinopathy. I got two cortisone shots for that 6 days ago.
The hip area pain just keeps getting worse. I've had to cancel many plans and limit my activities. It's very depressing and is driving me crazy. Just wondering if anyone else is dealing with this and if they have any suggestions for both physical and mental health. Thank you.
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I have similar that I don't believe is nerve related, but it's most prevalent at the top of the pelvic bone halfway between the spine and outer back area. Did you have 3D MRI to confirm that the piriformis muscle is manipulating or contacting the sciatic nerve?
Embarks—I feel your pain. I am currently going thru the same thing myself. Four months ago started with continual throbbing pain my right buttocks. I thought the pain was associated with a long tern knee issue and the pain was manageable so I let it linger. Went on an easy hiking trip up to the Canadian Rockies in early October and the day after returning woke up with searing pain in my lower back. Thats lasted two days and went away. Then the hip and thighs issues started. Hard to walk, searing pain shooting down the outside of my thigh, etc etc. Been in physical therapy for six weeks with some minor progress. I wake up stiff, do a couple stretches to loosen up and try to hobble thru the morning. The real issues start in the afternoon and worsen into the early evening. Cannot put any weight at all on one leg and have difficult standing straight. Next week I see a hip specialist and later in the week a pain specialist. An MRI will confirm what I am pretty confident of—gluteal tendinopothy. It will get better in time—just need to figure out how to manage it in the meantime without losing my mind. Wish you the best. Keep the faith—it will get better.
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1 Reaction@chrisc58
Thank you, Chris, and I'm really sorry to hear what you're going through. You nail it exactly - how to manage the pain without losing our minds. I got up a little while ago and it's killing me. And I know what you mean about how things can get worse as the day goes on. I'm not even a good exercise routine at this point because of the pain - just some walking. Hang in there. Everything I read says it takes time, but the continuing pain is just so hard to take.
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1 Reaction@lynmen My doc prescribed duloxetine 60mg for back pain several years ago. I have chronic sciatica from spinal stenosis (narrowing of the spinal canal) and foraminal stenosis (narrowing of the openings at the sides of the vertebrae where nerve root bundles exit from the spine). The narrowing puts pressure on the nerve roots exiting in the lumbar region. I'm a golfer, and the sciatica really made it difficult to swing the club. I take a generic duloxetine (a Canadian generic manufacturer). The original drug (Cymbalta, from Lilly), worked wonders for me. Lilly stopped making Cymbalta about two years ago (reason: a 'business decision' - they wanted the platform for making another drug, and I'm guessing it was for the GLP-1 drug, Mounjaro). This decision upset many Cymbalta users like me because the generics did not work for some (quite a few) of us. So, I've tried a bunch of generics here in Canada, and none seem to be as effective as the original Cymbalta. In addition, the generics present a variety of challenges in terms of side effects, not from the 'duloxetine' (this was invented by Lily, and is a well known and standard formulation). So the generic side effects must be due to the non-medicinal additives, or to the way the timed-released mini--balls within the capsules are released inside the colon over the 24+hour period of release. Generic makers do things as cheaply as possible in order to save or make more money. So I would not be surprised that the drug-release mechanisms are different from the way Lilly made theirs. My experience is that, for example, the current generic I'm on uses a less subtle way to release the mini ball's bit of medication. With Cymbalta I never noticed a surge of drug release, ever. The generic I use has a release mechanism that I can often feel in my body as a SURGE of mild but noticeable nausea that lasts about 10 minutes then goes away a few times during the day and night. So my conclusion is that it's a crude release mechanism (dissolving of the wrapper around the little duloxetine balls). I was on Cymbalta for almost 10 years, and never once had a single problem or noticed anything like a 'surge' of medicine.
Anyway, yes Cymbalta was a miracle drug for my sciatica, but the generic duloxetine may not act as well as you hope. Try different generics if you don't like what was prescribed, I expect your pharmacist may have an idea about which supplier's timed duloxetine works best. Definitely worth a try. However, I wouldn't stay on a generic for more than two weeks or even less if you notice it's not helping. You don't want to get addicted to this drug unless it's really helping. It's difficult to wean yourself from it after a few months of use. The other thing I would add - the duloxetine is also an anti-depressant. You might notice, when coming off the drug, your demeanor has changed somewhat, that you're not as relaxed as you were while on the medication. It has happened to me. At my age (82) I'm probably going to be on this for life, which is ok by me. I just wish it was the original Cymbalta. Hope it works for you if you do try it. All the best.
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3 ReactionsThis is really useful - and scary! - information because I started duloxetine on Tuesday. 30mg once a day. Will keep an eye out for what you mention. I have to say I was kind of appalled when the drug info on this generic included some food dyes. I mean really. They have to use poison to color medicine????
The doc who prescribed it had his own experience with chronic pain, so I feel he does understand the situation and has some knowledge/wisdom that might be lacking in some other doctors. But I'll see. Really appreciate the people like you who share such useful information about their personal experiences. Thank you.
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1 Reaction@jonesycanuck
Thank you so much for repkying and for all the information in your message. Duloxetine seems to be a 'Marmite' type of drug with almost as many people saying 'Don't touch it' as those saying it has changed their lives by reducing pain and enabling them to take back control of their lives. I'm 79 next month and live in the UK. I have had two cancer ops over the past 21 years and 2 knee replacements which Isailed through, but the pain from this gluteal tendinopathy and the pain in my buttock, thigh and groin is very tough. Not getting any relief or finding anywhere comfortable to rest is very wearing. I'm doing the butt clenching exercises regularly and using ibuprofen gel just about everywhere! I'm seeing my orthopedic surgeon in January to agree to an ankle fusion which means being unable to load bear for 6 weeks so lots of sitting around which is not possible. I think I'm going to have to 'bite the bullet' and try this Duloxetine as nothing else is helping. Ibuprofen is not touching it. I'm impressed that you are still playing golf. My mother played well into her 80s and had 3 'holes in one'. When I read the posts on this site and see what younger people are having to cope with, I feel I need to get a grip and find some way to cope with this 'non-life threatening ' problem. I have several friends, now deceased, who would have given anything to be me today. Thanks again for your response.
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4 ReactionsJust wondering if you've found anything to relieve the pain yet. I'm seeing my physio on Tuesday and she's going to show me how to use a TENS machine. Have you tried one? The pain is really making me depressed and tearful and not being able to sit or lie without intense pain is so difficult. I'm starting to feel this is never going to go away. How are you getting on?
@lynmen
Hi there, and I'm so sorry you've having such pain. I got relief by carefully doing specific isometric exercises as well as SLOWLY doing reps, in addition to Shock Therapy (i.e., EPAT: Extracorporeal Pulse Activation Technology), which turned the corner for me, allowing me to walk with no or minimal pain. And, you've got to be patient; my gluteal tendinopathy started 13 months ago after my first and only COVID episode, of which I feel it's a sequela.
@lynmen
Hi. Have not tried a TENS machine. Please let me know if it helps. Besides tylenol, some advil, gabapentin...I'm now on duloxetine. Also trying some oral CBG/CBD and some CBD salve. Pain a little less today, but hard to tell what's helping, and it never completely goes away. Totally get the depressed and tearful thing. I'm so sorry you're going through that. The duloxetine is supposed to help with depression as well as the pain. I hope so. And yes, feels like it will never go away. Totally ruins one's life, right? Waking up every day to another day of pain. It's pretty miserable.
Good luck, and let's stay in touch.
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3 Reactions@emarks
Hi, thanks for responding. Please let me know how you get on with duloxetine - I believe the side effects are pretty rough. I have always found Advil to be effective in the past and a painkiller I am able to tolerate, but it's not touching this pain. I also take a very low dose of pregabalin for a different problem so I'm going to increase that. My sister takes co-codamol and advil for chronic back pain - I don't know whether you have it in the States. It's 500 tylenol + codeine. It causes constipation! The TENS machine is a precursor to shockwave therapy. The idea is to desensitise the area first. I'll let you know if it gives any relief.
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3 Reactions