I have struggled with pelvic pain for years. Beginning last summer, I started having problems if I walked too much. I would be able to walk with no pain, but four or five hours later I would get severe, raging muscle pain in the muscles at the front of my hips, my groin, and pelvic pain as well. For months I took prescription opioids and baclofen at the full dose I was allowed, 24/7.
My pain doctor said I needed a baclofen pump for that and tight muscles in my neck area. I had that put in last fall, but it was largely unsuccessful because it made my legs so weak I could barely walk, even at the "low" starting dose. After several months of not walking, the pain finally calmed down. I know it's not good to stop walking except around the house, and it did concern me at the time, but not having that pain was my all-consuming worry.
I did pelvic floor physical therapy for twelve weeks. I told the therapist I what was happening with the hip flexors, but she said not to worry because they're connected to the pelvic muscles. We did pelvic exercises and when working on me she just worked around the hip muscles. By then I could only walk six minutes on a treadmill, without causing myself pain and I was supposed to keep doing that.
Then in the spring I had what for me was a terrible relapse. Shooting electric shock sensations in my legs, feeling like I had to sit down before I fell down, etc. So I did what I always do for a relapse; I rested until I felt better. Unfortunately, that took months.
Since the summer, I have not been able to walk farther than my mailbox because of this pain. I waited months to see an MS specialist, who didn't seem to have any ideas. Then I waited months to see a rehab doctor, who thinks it's nerve pain and said I should take gabapentin (which does not agree with me) and walk as much as I can. Can muscle pain be nerve pain? In any case, just getting the exam made the pain come back! I have now been on opioids for years and they are not working as well as they used to, but my pain doctor has made it clear he won't be increasing my dose because he feels it would be dangerous.
My mental health has really suffered because of this situation. I have developed a lot of anxiety, which I know can actually make the pain worse. I also have anger issues that make the pain worse when something upsets me. Unfortunately, I can't tolerate antidepressants. I do have clonazepam I can take if I need too, but then I'm not good for anything for eight hours. Meditation and deep breathing seem to help with the pain and anxiety, but only for a short time. I am seeing a therapist.
I'm sorry this post is so long. I'm just wondering if anyone else has experienced anything similar?
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CatsandCars
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Thanks, that's a good thought but I've had MRIs of my whole spine. I personally wonder if it may be from inactivity or spending hours reading every day with my feet on a footrest and my knees up. Which I have stopped doing when I read. I can only keep mentioning it to doctors in case it's relevant.
I'm sorry you need a pain pump! I'm sure you must be in terrible pain before they consider that. If it's anything like getting a baclofen pump "installed", the surgery itself was really a breeze. I was home the next day and really wasn't uncomfortable. I hope your surgery goes well, too, and that you are able to get good pain relief.
sorry for all of that pain...if i sit with my legs up above me like i m in a chair and put my legs up on the arm of the couch that is higher than the chair that makes my legs hurt really bad ...have to get them down and put them level with me like in the recliner chair ....it is weird about what we use to be able to do but can't anymore ...i have to get up every so often if sitting and reading otherwise they hurt ...just walking helps me so much to help with the pain ...sorry no help for you ...just keep trying different things ...squats or something .....good luck ...
If it is was a relapse in Spring does your neuro want to change your DMT? Did they give you a round of steroids? Glad you finally got to see a MS specialist but if they aren't managing your MS properly, maybe you need to find another.Ergonomics is important, like you mentioned how you position your legs while sitting. Maybe you can see an occupational therapist to review how to best position yourself while walking, sitting and sleeping. I know if I don't have a pillow between my knees while sleeping my hip hurts a lot the next day.
I could not talk to nor get in to see him throughout the year. I was stuck with a nurse practitioner who said of all my other sensory leg stuff "Your MRIs are good and you're on a good drug, so it probably isn't from your MS." They declined to work with my pain doctor and primary.I do have an appointment with another MS specialist in January.
I'm sorry you're exhausted such pain, but I'm so glad you're going to see an MS specialist. When I read the NP said it wasn't the MS because the MRI looks good. I was screaming "get another doctor!" They're not listening to you.
When my back flared up last month it luckily coincided with my follow up on my broken ankle. My orthopedic doctor done x-rays & ordered a lumbar MRI. Luckily I have 1 good disc. I had steroids & my first chiropractor visit in nearly 10 years. She didn’t “fix” me but she sure didn’t hurt.
It is all a big hard to solve puzzle. The not knowing what to do is the worst! No wonder you have anxiety and anger issues. It is difficult to muster up a patient and calm attitude when you are trying so hard and no-one seems to know what to do. I hope you can find a solution.
I have found over the years that stretching has helped once our muscles lock up unless gently stretched it is almost impossible to return and have lost another function forever. The MSAA or MS Society have books available with suggested stretches it is just finding someone willing to assist and has the ability to help with developing a routine. I have found that a 1/2 hour routine two or 3 times a week is an tremendous help in slowing/delaying progression.
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Locked leg muscles. Botox, anyone? 
Walking
Pain: testing if MS related or not...
Oliver and I going for a walk 
