I truly understand your frustration! I developed MPS 3 years ago. Up until then I was a active runner. kayaked, hiked etc. I went from that to someone who could not even walk for more than 30 min. My trigger points are in my gluteal muscles and refer pain down my legs. Sitting was torture, too much walking caused terrible pain down my legs. I have herniated disks that showed up on the MRI. Doctors blamed that and I had many injections that did take away my lower back pain ( had that chronically last 20 yrs, that was manageable and not what I was seeking help for) Then had sacroiliac joint injected (no improvement). Finally the trigger points where addressed. went to PT, tried two different practices and neither helped at all. Had TPI twice. They where awful and like you, I think it just aggravated the trigger points more. In desperation, tried a chiropractor ant massage therapist with no relief. Medications I tried where muscle relaxers ( I think every kind) , amitriptyline, non steroidal anti-inflammatories . Vicodin gave some pain relief, but docs didn't want to give narcotics for prolonged periods of time, and I basically agree, but when your in so much pain you cant function, they sound pretty good! Anyway, after 2.5 years of misery ,and my doctors giving up on me, one suggested a rheumatologist. I went to him and he was very familiar with the condition and put me on Cymbalta. I started a a low dose of 20mg . It was horrible starting this med. Nausea, headache , lethargy. But I stuck with it, I was desperate . Side effects went away in about 2 weeks and I was titrated up to 60mg a day. I cant say all my pain is gone, but it is a 80% improvement most days, which I am thrilled with! I still have flare ups, and I now take Nucynta as needed for pain, but generally I take that once a week or less. I am able to be more active, not like I was before MPS, but much better than before I started the Cymbalta. I hope this post helps you, and gives you hope. Don't stop looking for the doctor that can help you too!

Hi - I was dx with MPS back in 2003 or so. I couldn't tolerate any of the meds. I have high serotonin and most of them give me panic attacks, except the old standard - Buspar. It does a nice job for my tension - with a tiny bit of xanax when things get rough, maybe every other week.
For years I went to PT and got ionto phoresis, steroids pushed into the tissue with electrode pads. It helped at first but after a while, nothing. I gave up for a long time, used tens at home (bought it from the UK by mail back then) and just heat packs and baths. Then I read about trigger point therapy called the Graston Technique. Non of my PT folks knew it but when I moved I got very lucky to find a UK trained Dr of PT who indeed does know it. I'm not going to say I am at 100% but my therapy is now every 3 weeks and I do ok most of the time in between. Ok meaning tylenol and once in a while some codeine. (Doc is very stingy, I get maybe 5mg every 3 days) Essentially they run the tool over your body to see the inflammation and then use the tool to press the knots out. It's hard at first but it's so much better after a month or so it's astounding. Now she does that every 2 visits and uses ultrasound the other time. We're considering going to once a month (from originally twice a week!). here is some info on it. It really changed things for me.. wishing you luck finding something that help. Oh, I forgot to mention I use infrared therapy at home too. You can find it online. https://breakingmuscle.com/learn/what-is-graston-technique-new-tools-for-healing

Hi sorry to hear you are having a rotten day, I'll join you in a good cry.

I am sitting looking out my large window onto my back garden enjoying watching a wattle bird doing acrobatics getting nectar. Moments like these help me get through the day.

Chronic pain sufferers have super highways for pain to the brain and when you are told by unhelpful people it is all in the head they are closer to the truth than they know, even if their comment is ignorant and hurtful.

The only good thing I learnt from my 6 week intense pain clinic program was to learn how to accept the pain in each location and talk myself through how bad it is, that it will go away even if temporarily as it has before and it will not kill me. It doesn't stop the pain, but stops me fighting the pain and keeps me more in control of my body.
Before getting out of bed I do a mental scan of each area that is in pain, deep breathe until I acknowledge the area of pain. This helps the response of my brain to the pain. It has changed the way I view my pain although I still have melt downs.

Have you tried tai chi as a way to exercise and keep moving. There is one for arthritis. It is calming, great for muscle control and can be done seated.

Remember you are not alone

Hi there! I can relate because I have been suffering from chronic pain for over 20 years. Exercise and nutrition definitely play a key role because I feel less pain in my jaw when I eat healthy and taking Cymbalta helps mitigate the neuropathic pain in my ankle and knee. Being in pain sucks and it is hard to deal with. I find myself feeling miserable after work and it keeps me from dating. I pray for all of you guys out here who are suffering.

Riley