Gluteal tendinopathy - endless pain - losing my mind

@emarks

I can totally empathize with how hard it is to deal with sudden, chronic pain stealing your quality of life and mental health. I used to be able to do so much and loved to dance! I used to walk fast and was very independent. Things started to worse. after I had my only child at 40. My spine symptoms started around 41-42 and worsened gradually ever since. That is when I found out I was born with a narrow spinal canal. Normal width is 15-17mm and mine is 10mm and my current L2-L3 herniated disc makes it 8mm.

Before my lumbar surgery to decompress and fuse L3-L5, my MRI showed my L4-L5 severely blocked and no space at all for my spinal cord. It caused me low back pain, pain/weakness and numbness from hips/buttocks down legs to feet. If I stood for a few minutes or tried to walk my dog, my feet would go totally numb. Standing up, going up/down stairs, bending, lifting, sitting was hard. Lying down seemed the only relief. I had tried about 6 total spine injections over several years and when the last 3 in a row did nothing for my pain, I moved to surgery.

It is good to try a few more spine injections, physical therapy, massage, acupuncture, pain patches/roll-ons/creams (lidocaine, Voltaren gel, etc.), and antidepressants. I did try several medications and there was a time that Cymbalta/duloxetine helped (prescribed for arthritis, nerve, fibromyalgia pain and depression). There was a period I took Cymbalta/duloxetine and Wellbutrin/duloxetine at the same time. I also have idiopathic small fiber neuropathy. Gabapentin and pregabalin (Lyrica) doesn’t work well for me because it makes me too dizzy/tired and actually increased my nerve pain.

You may want to look into to a psychologist that specializes in chronic pain and its impact on mental health. It is good you are working with a psychiatrist on your depression medications. I worked with my primary doctor when really struggling with depression in 2023 and they tried different medications and combinations but nothing was helping or caused too many bad side effects. My psychiatrist was patient working with me to gradually increase me from 150mg Wellbutrin/bupropion to 300mg then 450mg and stop everything else causing me bad side effects. I am in a much better place.

I am going to try the Signal Relief patch to see if it helps with my pain. They aren't cheap but I have heard they have helped many. Be careful taking too many NSAIDs like Motrin/Advil. I learned the hard way taking too much for pain and it caused me esophagitis and gastritis erosions. I now only take extra strength Tylenol as needed for pain/headache/fever.

Just fyi…my symptoms for cervical spine compression and myelopathy were daily headaches, tinnitus, neck/shoulder pain, arm/hand numbness/weakness, dropped things and handwriting worsened, bladder control was affected and walking/balance became difficult. After surgery on my C5-C6 (later C6-C7), these symptoms improved but delayed diagnosis caused permanent damage to my spinal cord due to longterm compression (have residual shoulder/arm/hand weakness). I have been told that your lumbar spinal cord/nerve roots may be able to repair/recover but some longterm nerve damage is possible if you delay surgery. Have you read in detail what your MRI shows in your lumbar spine? Do you have a herniated disc, bone spurs/osteophytes, central or foraminal stenosis, hypertrophy, thickening of ligamentum flavin? Do you have facet joint degeneration? Did you have an accident or injury before your spine/hip/buttock pain? Do you work a physical or office/desk job?

You are not alone in your suffering and you can reach out to me anytime as I am happy to share experiences of what works/doesn’t work.

Thank you. I know what you mean about if someone had listened carefully. The different diagnoses and failure to find something that eases the pain is so frustrating.
For what it's worth, everything I've read on reputable sites says diagnosis/misdiagnosis is very common, that it often takes several doctor visits to get it figured out because the symptoms of L5/S1, piriformis syndrome and gluteal tendinopathy can overlap so much. And yes, airplanes. Have not seen my son in Colorado for a year. About two months ago the back pain had eased enough that I was looking at dates - then this buttock/hip thing got so bad that, for example, I couldn't go into NYC last night to see a concert with my other son.
You almost have to laugh at the sites - again, reputable ones, the .org kind like this site - that say gluteal tendinopathy can affect your ability to be active, to sleep well, and to enjoy life - no kidding!

Thank you. I know what you mean about if someone had listened carefully. The different diagnoses and failure to find something that eases the pain is so frustrating.
For what it's worth, everything I've read on reputable sites says diagnosis/misdiagnosis is very common, that it often takes several doctor visits to get it figured out because the symptoms of L5/S1, piriformis syndrome and gluteal tendinopathy can overlap so much. And yes, airplanes. Have not seen my son in Colorado for a year. About two months ago the back pain had eased enough that I was looking at dates - then this buttock/hip thing got so bad that, for example, I couldn't go into NYC last night to see a concert with my other son.
You almost have to laugh at the sites - again, reputable ones, the .org kind like this site - that say gluteal tendinopathy can affect your ability to be active, to sleep well, and to enjoy life - no kidding!

Thank you. I know what you mean about if someone had listened carefully. The different diagnoses and failure to find something that eases the pain is so frustrating.
For what it's worth, everything I've read on reputable sites says diagnosis/misdiagnosis is very common, that it often takes several doctor visits to get it figured out because the symptoms of L5/S1, piriformis syndrome and gluteal tendinopathy can overlap so much. And yes, airplanes. Have not seen my son in Colorado for a year. About two months ago the back pain had eased enough that I was looking at dates - then this buttock/hip thing got so bad that, for example, I couldn't go into NYC last night to see a concert with my other son.
You almost have to laugh at the sites - again, reputable ones, the .org kind like this site - that say gluteal tendinopathy can affect your ability to be active, to sleep well, and to enjoy life - no kidding!

@emarks
Yes, I understand your pain. I have constant pain in my right buttock for almost 1 year. I had 3 cortisone shots , PT, NSAID'S, Tylenol, nothing helps. I have been to at least 5 doctors, xrays, MRI 's CAT scans and have not received help. IIt is hard to go anywhere and sit for any amount of time. I have no quality of life. I keep praying and trying to keep positive.

@emarks
Yes, I understand your pain. I have constant pain in my right buttock for almost 1 year. I had 3 cortisone shots , PT, NSAID'S, Tylenol, nothing helps. I have been to at least 5 doctors, xrays, MRI 's CAT scans and have not received help. IIt is hard to go anywhere and sit for any amount of time. I have no quality of life. I keep praying and trying to keep positive.

@emarks
Yes, I understand your pain. I have constant pain in my right buttock for almost 1 year. I had 3 cortisone shots , PT, NSAID'S, Tylenol, nothing helps. I have been to at least 5 doctors, xrays, MRI 's CAT scans and have not received help. IIt is hard to go anywhere and sit for any amount of time. I have no quality of life. I keep praying and trying to keep positive.

Sorry you're going through a painful time. I can relate to some of your pain areas. Also the difficulties that interfere due to the pain suffering and anxiety that naturally kicks in. My tests don't find anything that would cause it. I was reading some of the replies you're getting & impressed with the remarkable helpful souls replying. Hang in there, ttys. You're not alone.

@emarks

I am new to this site and have been reading all the postings desperately looking for help and suggestions of how to deal with the pain of gluteal tendinopathy and ham string tendinitis. I have been suffering with both since an excessive amount of driving on holiday in June. Despite daily exercises and losing one and a half stone, the pain is getting worse and sitting and driving is very difficult. I have been taking ibuprofen, but it's now not touching it. My doctor has prescribed duloxetine and I am scared of taking it having read so many horror stories. I am very sensitive to medication and opioids make me ill. My mental health is suffering and I'm hoping, by joining this site, I might find someone who has found a way of dealing with this horrible condition.