My MS Is Getting to Be a Pain, Literally

My MS Is Getting to Be a Pain, Literally

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why.

The pain is most intense when I first put my feet on the ground, either getting out of bed in the morning or sliding off a wooden stool to a standing position after breakfast in the kitchen. It’s worse if I’m standing or walking on a hard surface, such as tile, and in bare feet. It’s less intense as I walk, using my two canes. And it’s hard to notice it at all, right now, as I’m writing this sitting at my desk on a comfortable leather chair, feet on the ground with good back support.

Tracking the pain

Since MS pain is new to me, and since I’ve read about some neurologists (not mine) poo-pooing the idea that MS can cause pain, I began a little research. One of the most comprehensive overviews came up on the U.K.’s Multiple Sclerosis Trust website. It lists a number of types of pain that can be associated with MS.

They include nerve pain, such as:

  • Trigeminal neuralgia, an intense painful sensation in the side of the face.
  • Lhermitte’s sign, electric shock feelings in the neck and spine which are sometimes painful.
  • Optic neuritis, which can give a sharp, knife-like pain behind the eyes and sometimes also causes difficulties with vision.
  • Painful altered sensation, sometimes called dysaesthesia or paraesthesia, which can be described in a variety of ways, including pins and needles, burning, numbness, prickling, itching and crawling.
  • The MS hug (banding or girdling). This is a feeling of chest pain, rib pain, tightness, or being squeezed around the chest, although it can be around the hands, feet, legs or head.

And musculoskeletal pain:

  • Hip and back pain caused by alterations in how you walk due to MS, possibly because of muscle stiffness (spasticity), weakness, or problems with balance.
  • Back pain due to sitting for long periods because of fatigue, walking difficulties, or an inability to stand for long.
  • Muscle or joint pain due to changes in posture, spasms, or muscle stiffness.

You might also have a pain as a side effect of medication, or from a medical condition that’s not related to MS.

Is it my meds or my gait?

I received Lemtrada infusions in early December. Though hip pain isn’t specifically listed as a side effect in Lemtrada’s patient guide, the guide does list joint pain, back pain, and pain in the arms or legs as common side effects. I’ve also seen posts on the unofficial Lemtrada Facebook group from patients feeling bone pain. So, could my hip pain be connected to the Lemtrada?

Or, could the pain be related to the IV steroids that are a part of the Lemtrada treatment? I had several rounds of Solu-Medrol (methylprednisolone) when I was first diagnosed with MS back in the 1980s. Bone and joint pain are among the side effects listed for it. And the use of steroids may result in a loss of bone density and increase your risk of developing osteoporosis.

Another thought. Over the past three months I’ve gone from using one cane to using two. I’ve also increased the amount of walking I’ve been doing each day (not that I’m doing very much, mind you). My posture is poor and my gait is unusual.

So, is my hip pain a result of my meds or my gait? Obviously, a trip to my neuro or my PCP, or both, is in the cards. I’ll keep you posted on what they say.

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  1. Patricia Robertson says:

    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!

    • Ed Tobias says:

      Hi Patricia,

      Thanks for your suggestion. The first thing I’m going to do is get an x-ray and/or a scan, and see if anything shows up. I’ll go from there.


      • Kay says:

        I have had ms for about 30 years. In my younger times I had frequent use of steroids which I ended up with bother hips replace because of avascular necrosis a dying of bone tissue. Have hips checked for bone issues which maybe a problem. I still have pain but not from bones but from muscles in that area. Good luck.

      • Peggy says:

        I was diagnosed 3yrs ago with RRMS. last fall I started having horrific back pain ….woke up one day with it and could hardly walk. after months I finally got into a pain clinic. So far I’ve had 2 lumbar ablation. which have done wonders!! I have spinal stenosis with bulging disks. finally starting to exercise again….after not doing anything, I gained 50 lbs… I’m sure that hasn’t helped me!! Best of luck to you!!!!

  2. Jarred says:

    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.

    • Ed Tobias says:

      Hi Jarred,

      Your pain sounds similar to mine. I’ve been considering acupuncture as an overall MS treatment, but first I’m going to get an x-ray and/or a scan and see if anything shows up there. After that I’ll see where the road leads.

      Thanks for sharing your info,


      • Misc says:

        Hi, jarred, am doing accupuncture once or twice a week, my only treatment am doing and taking Chinese herbs.Am having ppms after child birth.Had Ms since 2009 without medication too only on supplements.Main issue was numbers and weakness in both my knees. You may try accupuncture ?, quite relaxing and soothing

  3. Jenn says:

    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.

  4. Nance says:

    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!

    • Ed Tobias says:

      Thanks for the tip, Nance. Your symptoms sound similar to mine. Interestingly, I’ve been playing around with different shoes. I’ll bring that up with my doc.


    • Sandi says:

      33+ years for me……pain in my hip was x’cruciating and causing me to fall to the floor when the nerve got hit. the neuro surgeon did surgery on my S1 disc that was highly compromised and unstable. not sure it has helped too much but i did the surgery to keep my job (falling down there wasn’t good) but they “let me go” anyway. i find the most relief when i ‘xcersize in the pool. plus ldn offers some relief!

  5. Sharon says:

    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.

  6. Jessi says:

    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!

    • Ed Tobias says:

      Hi Jessi,

      Thanks for the info. The thought of a hip replacement (or two) has crossed my mind and I hope your new one is serving you well. We’ll see what my tests show.


  7. B says:

    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).

    • Ed Tobias says:

      Thanks for sharing that info. There are a lot of possible causes for my specific pain, so we’ll see what tests turn up. I suspect that it will be related to my MS, even if the relationship is indirect, e.g. steroid use or falls that I’ve taken over many years all adding up and taking their toll.


  8. Ron Smith says:

    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.

    • Melissa Craig says:

      Yoga and swimming saved me from falling down everyday. My muscles still get week,but I made up my mind to keep moving. Even when I don’t feel well, just keep moving. *Always swim with a buddy.

  9. zelda moyer says:

    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

  10. andy eichmann says:

    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 .

  11. Jessica says:

    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!

  12. Wendy says:

    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.

  13. Nina says:

    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.

  14. Marie says:

    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.

  15. Debz says:

    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.

  16. jensequitur says:

    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.

  17. Gloria says:

    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

  18. Glenda Shine says:

    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!

  19. Chris Kennedy says:

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

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