My MS Is Getting to Be a Pain, Literally

You might want to try foot orthotics. I had hip/knee pain also. I have been doing physio and have orthotics with a lift in one shoe to compensate for a height imbalance. I have wondered if my Copaxone injections have weakened my muscles in the affected areas as I do have obvious lipatrophy. Good luck!

I've had RRMS since 2010 and have had moderate to severe pain in my tailbone and hips for the last two years. I don't have a bad gait or walking problems and the pain came out of nowhere and my docs have no explanation for the cause other than that it might be from MS. I've had many images and tests performed to rule out other causes to no avail. I tried a procedure called a ganglion impar nerve block that didn't seem to help. Other than pain meds the only treatment that has helped is acupuncture, which has made a big difference in managing the pain and I recommend anyone with this type of pain to try it. Hope this helps someone.

I've been dx'd with RRMS since 2008 and pain has been part of my day pretty regularly. initial pain was like carpal tunnel, which is how I ended up diagnosed (with a nerve conduction test on my arm showing lack of signal from my neck, where they later found lesions and more in my head as well). That comes and goes still but now my biggest issue is OA in my knees. I have had a few solumedrol infusions over the years, which actually made my knees feel better, and more recently have needed injections in my knees just for the OA pain, but I'm pretty sure all of that is just causing more OA. Knee replacement(s) are in my future, but it is hard to stay moving like I need to, to lose some weight prior to the surgery. I also have always had (prior to dx) the painful parasthesia, buzzing, twitching in weird places, itching. All this said,one way or another MS pain certainly is real, sometimes secondary to the things we do to alleviate other symptoms, but real nonetheless.

I've had MS for 30 years & have also been pain free, until last fall. I also started suffering from tremendous hip & pain that radiated into my groin & lower back, it got so severe I could barely walk or stand without having excruciating pain. I finally discovered it was bursitis which originated from my footwear, the worst culprit was from my 15yr old Crocs. Once I invested in appropriate footwear my problem went away, 1 of the pairs of good shoes I prefer & wear frequently have started causing small flare ups so I think it is important to renew your footwear often. So maybe check that out!

I've been diagnosed 13 years now and after reading your comments and everyone else's there are so many similarities that I have just been putting down to getting older, being tired, daily life. Thanks to you all for making me realise I'm not just moaning that these feelings symptoms are real.

Have had MS for 12 years. At year 8, I developed pain in both hips...worse in the right. Turns out it was avascular necrosis; caused by smoking (NEVER), obesity (NEVER), or Steroids (YEP!). Had a total hip replacement in my right hip and my surgeon said push the left one out as long as I possibly can, I'm still hanging in there! No more steroids for me!

I too started having pain/weakness in both hips, they kept saying it was due to my MS (dx'd 20 yrs ago). To me it did not feel similar to any of my MS symptoms so after a few years of my complaining they did an MRI. After the MRI they asked if I was in an accident… turns out it wasn't MS related - the labrum in both hips is "shredded". Because of that & other symptoms, they say it is likely due to taking the antibiotic Cipro (took it here & there years ago, damage can show up anytime!!). So be careful blaming everything on MS. (& its not bad enough to require surgery yet).

I have been diagnosed for 10 years now and my neurologist told me to do yoga, and it has been a life saver for me. Started with chair for Cancer & Chronic disease and progressed to some normal classes and different types of massage and energy work. Balance improved greatly. Had to quit for a while and all symptoms came back. Starting over again and things are slowly improving again. Check fir it in your area.

I have had ms for 20 years I have been complaining for many years about my pain. I have neck, back, both hips and both knees. on really bad days my hair, teeth, and nails hurt. my doctor ordered me motrin but it did absolutely nothing for the pain. I have learned to live with it and don't get much accomplished these days because of it. I try to stay active as I possible can good luck and hope you find relief of your pain

i have a simular problem got on nerve pills helps but keep increasing doseage . i have found it's a muscle . doing squats with dumb bells and weights overhead , curls , lifts . been getting better .

My first symptoms of MS were Fatigue and Pain. I thought I RA or Lupus as they run in my family. When I was finally diagnosed I had hip and knee pain then went numb from my toes to my bra line. I was dx'd with MS & Transverse Myelitis. Pain with MS is real. Have you seen a pain specialist? Also a physical therapist is always good to have. A PT who works with neurological disorders is best. Take care!

I do better in bare feet, not worse. Almost all shoes really hurt my feet now, since my ankles are "twisting" more, which causes my feet, (especially my right one) to lean and "turn" out, to the right.

I had hip pain that lasted for several days after recent high doses of prednisone. It's better now, thank God. However, I concluded it was most likely the prednisone. Keeping fit, moving, stretching & strengthen is critical combined with healthy diet. I'm living proof, since neuro's said I had MS 15-20 Yrs. Undiagnosed til Nov.2016, age 59.

Thank You to everyone who has shared info on this. I was diagnosed with RRMS September 13, 2010 and gradually gone downhill ever since. When the pain in the pelvic girdle, hips and lower back started, I chalked it up to age - not MS. This is a horrible pain, and when it starts, I have only minutes to sit down. If I try to keep going, my legs give out and I end up sitting wherever I land, sometimes for several hours. I'm planning to print this, along with all the comments, so I can take this to my doctor - I've been trying to describe this, but fall very short. So, again, Thank You All for putting into words something that is so very serious but difficult for me to describe.

I was diagnosed with MS IN 2006. I took Copaxone for 7 years & ran out of fat to shoot in. I then switched to Tectfidera. I have had pain in my hip even before the MS Therapy. It was diagnosed as bursitis and was started on Tramadol by a pain MD & continue to take it once a day. Hydrocodone was then added which I only take as needed. I have added chiropractor with TENS unit. It seems like it may not be MS pain, due to the location of the lession location in my brain, but it still hurts. I wish I could get to the root of it& cut it out. I try to stay active & positive.

I highly suggest water exercise and yoga. They have been a God send for me.

Swimming

Hey, I suffer from hip pain in both R and L. It's a specific muscle inside my hip, running from the spine to my hip bone called the psoas major. It's possible that the psoas minor is also involved. I can palpate the muscle by lying on my side relaxed, and digging my thumb into the muscle directly above the bone of my hip. It's literally inside my hip, so I can reach it by curving my thumb and digging into my hip. My guess is that it's spasticity. I can stretch and get some relief, but also I take baclofen for it which really helps.

Gave up gluten.
Yoga helps.
Ice skating is the best thing to stop my hip pain.

My daughter also suffer from pain and Eye lost 40%. She is very young and very positive. Cannabis oil is the best thing you can all tried. It may not cures ms but will give some hope for the future. A good diet and reiki will also help. Chakras plays an important role in peoples health and development.
We mothers do not have the physical pain but suffer as much as you all are going through. God be with you all
Gloria

Hello Everyone,
I was diagnosed with PPMS in 2011. For several years before that,pain is what drove me to my doctor. My pain was on the outside of my left hip with corresponding pain in my left foot. My hip and foot share the exact same level of pain each day. My doctor thought Bursitis, no. Then I wore a foot brace for 3 months, no. Next my husband asked if I had told my doctor about my numb right foot that I had for the past few years. Well, no, I had not because it did not hurt! This sent me straight to the neurology department and testing lead to my diagnosis about a year later. Pain however still is my number one issue. I have added just about every symptom listed for MS except nothing affecting my vision. I can live and deal with them all except this pain controls my life. In 2013 I had spinal surgery to see if the MS was exasperating my mild Spinal Stenosis. I am now a proud owner of a beautiful scar that runs from tail bone up to shoulder blade height. Two titanium rods, and six titanium screws and you guessed it,the same amount of pain,plus new lower back pain. I just can't seem to win this game.The pain has migrated to encompass my entire left hip, has slowly moved across the top of my hips and now also affects my outer right hip and right foot. I don't understand the hip/ foot connection that leaves out the entire leg between. So far, no brilliant ideas from the medical field. I read every MS post about pain, hoping someone out there has found an answer. My thought and prayers are with you all. We are MS warriors and this too we shall survive!

Very intresting discussions, I also am starting to have some pains in different places. Thank you for sharing your your hints and expierences.

Diagnosed in 2013 with RRMS, the worse symptom I have is back pain and fatigue. I am thin and fit but still no relief. No foot problems or hip problems. Legs are heavy and weak. Can get relief no matter what I take or try. Need advice.

Hi I'm so sorry that you are having severe hip pain. I've been having it since 2012 and x-rays showed sacral iliac inflammation and sacroiliitis. Now I'm using my sacrotech belt and it helps. Along with tens units and a Biowave Go. The SI joint injections helped for like 2 weeks or less. The belt is called Sacro Tech and I recently read where I should wear it like 23 out of 24 hrs for three to six months. Praying ? it works and praying ? for you to get relief from your hip pain.

I take no meds for my M.S. and have hip pain. It presented during my last solumedrol steroid infusion a couple years ago. It slowly went away over time. I just went for another infusion last month and the hip pains came back, along with shoulder pain. Both are pretty intense and are sticking around for now. Another bone pain type issue is tooth pain and an almost dried out feeling that I get during my week long steroid infusions. Steroids can't be good for our bones if they suggest bone density testing with them.

I've had ms for 11 years having severe back and hip pain nothing seems to help .

I was diagnosed with RRMS MS in 2016. Prior to diagnosis I've suffered with pain since Glandular Fever in my early teens. Joint pain in knees, wrists back, wrists, hips etc. I've had Bursitis diagnosed in my hips prior to MS diagnosis and had Steroid injections as a result. Also in my wrists. My latest bursitis diagnosis (today) is in both my feet. I've tried to keep my steroids to a minimum as far as MS treatment goes. I have Trigeminal Neuralgia as well as the constant pain I have my joints. I have changed my diet and do reformer pilates twice weekly, hike, walk etc. But pain is my constant "friend". The point of this is...after today's diagnosis, I tried to look for a reason...why do I keep getting bursitis?! So I googled MS and Bursitis and found this. Coincidence? After reading everyone's responses...i think not!