Low back, Hip, & Leg Pain

Posted by courtneyrose @courtneyrose, Feb 25 9:57pm

I’ve been struggling with debilitating pain for over 10 years now. I remember having lower back pain when I was younger but after I had my kids it all just spiraled out of control. I’ve had so many tests done over the years.. MRIs, EMG, Ultrasound on my legs, bloodwork. I have a positive ANA and have seen two different rheumatologists but it has never given me any answers as far as autoimmune goes. I have been diagnosed with Ehlers Danlos Syndrome, POTS, & Mast Cell Activation Syndrome. The pain in my legs is intolerable sometimes even with my medications. I currently take:
800mg ibuprofen

The buprenorphine helps significantly but I don’t feel as if the gabapentin and orphenadrine do much. I’m going to my PCP and hoping to talk about alternatives to these two drugs. Anyone have similar issues and have successfully managed with medication?

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Hi there- Your post caught my eye because I have POTS, HSD (the subclinical version of EDS) and am suspected of MCAS. I also have low back, hip, and leg pain.

But I’m not sure if our pain is quite the same. I don’t tolerate medication well and I have to limit NSAIDs because I have one kidney, so although I have chronic pain syndrome too, I don’t take much for it.

I take Celebrex (an NSAID) 100-200 mg per day as needed, I use KT tape sometimes which helps me a lot, and over time the main thing that has helped me is PT. I realize that may sound unsatisfying, but my pain is caused by a combination of musculoskeletal issues from the EDS/HSD and my nervous system response to central sensitivity syndrome, and the recommended treatment is PT for both. With the EDS/HSD, I have instability in my core, pelvis and hip so I keep getting recurring hip bursitis and SI joint pain. I also have hip impingement that causes recurring pain. Fatigue from POTS and central sensitization makes it hard for me to progress the strength exercises quickly. And I can’t increase intensity quickly either because with central sensitivity, my brain/body is prone to rejecting sudden changes.

At first, I wasn’t diagnosed with an autoimmune arthritis. But after I didn’t improve with PT (things only got worse), I got sent to a rheumatologist. I had so see 4 rheumatologists, including at Mayo where they missed my diagnosis, before I got a diagnosis of seronegative spondyloarthropathy. I don’t know much about autoimmune labs because well, I’m seronegative, but if it still doesn’t feel right to you, it may be worth seeking another opinion, even though I know that’s a huge pain.

Were you able to get a diagnosis or explanation for the pain you’re describing, or did you ever get evaluated by a PT? It’s also possible that since you’ve had the pain for so long, that you may have developed central sensitization, so that could be something you might want to look into. Medications are similar to what you’ve tried thought but are usually combined with physical therapy and other ways to calm the central nervous system.


I’m so sorry to hear of all your pain! I have chronic pain as well. I get a lot of relief with a tens unit. You can get them easily at a pharmacy or on Amazon. Best wishes!


I am sorry to hear you have so many sources of pain. Life is so challenging when you are in constant pain.
I have knee osteoarthritis which causes back pain and hip pain due to misalignment. I also have kidney disease so I can’t take oral pain medication. The alternative pain relievers that work for me are alternating hot packs and ice packs on my knee or lower back, acupressure/foot massage which relieves the pain in my lower back and I can do the massage myself, and Tapping - which I use to relieve pain anywhere in my body.
All of these methods have no negative side effects (unless you leave a heat pad or ice pack on too long🥴). Acupressure and Tapping don’t seem to work for everybody - but then oral pain medications don’t work for everybody either.
Theses alternatives work for me, and it is easy to give them a try to see if they work for you.
Best wishes to you, I hope you find relief from your pain.


@courtneyrose maybe you need an increase in your buprenorphine. I had started on patch of 15mcg/7 days but it was not effective. I had to into 20mcg/7 days and I’m good. I also use THC and CBD tincture for breakthrough pain and no longer need oxycodone for that. I cannot take NSAIDS so no anti inflammatories for me. I tried gabapentin but I couldn’t tolerate being unsteady while walking.. I tried Turmeric which helped but it made me anemic and I had to stop temporarily. I’m going back on it in 2 months but will consume it differently so no more anemia. Good luck with your pain control.


Do you have any burning sensation on your legs?

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