Myasthenia Gravis News Forums Forums Healthcare and Treatments Back Pain and weakness causes?

  • Back Pain and weakness causes?

    Posted by RobertS on January 1, 2024 at 11:32 pm

    Does anyone else have Back pain and back weakness from MG? I have read online that it is common to have extremities weakness, but I do not read much at all about the back. I have a very bad back, and standing in one place to do dishes, or just standing in one place talking to someone is brutal. For the past 4 or 5 years, I have struggled with this back pain and horrible fatigue. Since I have recovered from two crushed vertebra L1, T12 in 2011, anytime I looked for relief, docs looked at my back and said they see nothing they could do. I am a month in to a positive Musk test for MG(on meds) and am now wondering if my back pain and weakness is not from my broke down worn out back but actually from the MG, and that I am more and more thinking it has been there for many years. Now, in the last year, I have really developed severe leg weakness, double vision, terrible neck pain, brain fog, I am just out of gas, out of energy to keep the pace of lifestyle that I have been accustomed to for a very long time.

    Is it possible that I have been fighting MG affecting my back more than my bad back?

    paul-spychalski replied 1 day, 21 hours ago 20 Members · 41 Replies
  • 41 Replies
  • paul-spychalski

    Member
    January 3, 2024 at 11:07 am

    I’v had that for a LONG time. I get epidural shots in my back every year now. I’m going next week again. I have double vision ( bad ) and all the symptoms of MG. Pyridostigmine helps. A back brace may help you and floor exercises for the low back will help if you can do them.

  • robert-zidle

    Member
    January 3, 2024 at 6:21 pm

    Hi Robert:

    I can relate to those symptoms. In March, I suffered a relapse after a long stretch in remission. Most of the symptoms have abated – no more double vision, no speech issues, etc. However, I have had a lingering weakness in my lower body, mid-section and lower spine. Until recently I was unable to play golf because I couldn’t pivot around my spine with any strength. Prior to my relapse, I underwent spine surgery for stenosis and disk damage. So, I’m in the same boat as you. Is the weakness a result of the back surgery or my MG? I think a combination of both. I’m encouraged that I have been gradually regaining back strength which leads me to believe a lot of the weakness is MG-related. Strength gain has been very gradual (about 9 months to reach 65% of my pre-relapse condition,) but I see evidence of recovery each month. I wish you the best in your treatment and progress toward remission.

    Bob Z.

    • RobertS

      Member
      January 4, 2024 at 8:56 am

      Done some PT for the back before I knew I was fighting MG. It did help, but not as much as it could have without MG. I am an industrial controls instructor for a local community college and being on my feet most of the day working with students in labs has become very challenging for the eyes and the legs. By the end of the work day I am wiped out and the legs are wanting to cramp up. Pushing the water doesn’t seem to help with the cramps. Is there something you do to combat cramps?

    • RobertS

      Member
      January 4, 2024 at 10:44 pm

      Thanks for the feedback, as I said I am basically a month into this diagnoses, I really do not know much about MG, But I know that I am not right, and still trying to sort out who is doing what. The more and more time goes on, the more I suspect that I have been fighting MG more than a “bad back”. That creates a whole new focus on recovery/repair plan. Two years of recovery and healing with the back around 2012, since then I have been very active all day long, teaching industrial controls is my day job, I have around 3 dozen hens, 2 dozen hives, a bunch of fruit trees and a very large garden. but hte last year or more has been a struggle to keep up with everything. I am only 57, so I should have what it takes but I am jsut out of gas.

      What is your go to method for gaining enough enegy to keep going and get the work done for the day to day tasks?

  • anne-aloi

    Member
    January 5, 2024 at 2:12 pm

    Hi! I am a horse trainer and have had back trouble for over 30 years. Never had surgery but have seen my share of epidural and oral steroids. Diagnosed w MG 4 years ago and it has had no bearing on my back problems. I will say that I continue to do what helps my back and so far that is working. I hope you find relief!

    • RobertS

      Member
      January 5, 2024 at 7:41 pm

      got my first epidural about a week ago, L5 S1 area left side, I think it helped, no where near where I broke it, that is just old back stuff. I have been getting facet injections down there until I had my bilateral laminectomy in the same L5 area, and now with the scar tissue they will not do the facet injections any more. Hope it helps the low back pain, but my weakness has only improved since I started the Pyridostigmine, but wow, I think that stuff is really giving me the runs, I have not had a regular poo since I started this drug. I have got to find a solution for this for sure.

  • Mama

    Member
    January 5, 2024 at 2:36 pm

    Robert

    I was just diagnosed with MG in August of this year. I have dealt with back issues for some time and I go to a chiropractor. The x-rays show I have degenerative disc disease and scoliosis. I had not considered back issues with MG but anything is possible. I have an appointment with my neurologist in a few weeks and will ask his opinion. My symptoms were slurred speech and not being able to swallow without choking. The medicine has helped greatly. I had three months of infusions but because of some low numbers on the lab work, they have been discontinued. Best of luck on this journey.

    • RobertS

      Member
      January 5, 2024 at 8:19 pm

      Fortunately I have not had any swallowing problems, I do get tired quickly if chewing steak, but fortunately I don’t have any problems getting it down. I am confident that my back and leg weakness is MG, leg pain is old back. I passed all sorts of nerve test EMG and stuff, never a problem, my back and legs just run out of energy way too soon from the MG. If the MG effect so may peoples neck why would not effect the back in my opinion.

      I wish you great success in your treatment journey

    • paul-spychalski

      Member
      January 31, 2024 at 2:23 pm

      I injured my back in 1966 and it still hurts today even after A Laminectomy of L-4/5, and L4/5 & S1.

      Now the Cortozone shots don’t work, the Pain Dr. is going to do some new Medicine because now it’s Arthritis. Maybe it’s the same for you. I’ll post what it is and if it works.

  • CAPacheco

    Member
    January 5, 2024 at 6:23 pm

    I have experienced considerable back pain and weakness in low back and above my waistline since undergoing treatment with Vyvgart. First round began in August; second round was in December. I am scheduled to see a pain management doctor because per my neurologist, it cannot be related to the Vyvgart, although per info I have read, it was a side effect during clinical trials.

    • RobertS

      Member
      January 5, 2024 at 7:46 pm

      The one thing I like about the pyridostigmine is the fact that is a old tried and true drug. I wise you luck with your treatments, I am trying to stay away from the new stuff unless I have to.

  • casdanben

    Member
    January 6, 2024 at 3:32 am

    MG can affect any skeletal muscles, so yes it can affect your back muscles. Ar tes my core muscles become very weak, it is hard to explain but I feel like a wet noodle trying to stand erect. I also have a history of vertebral fractures and it is a totally different feeling.

    • RobertS

      Member
      January 6, 2024 at 8:57 pm

      yes, a wet noodle, it really takes effort to stand up straight and I find myself leaning on an elbow way too much. I think this elbow leaning is mostly to blame for my new relentless neck pain. I am 57 and I have never had such neck pain as I have had in the last 6 months.

  • Cheryl

    Member
    January 10, 2024 at 3:22 pm

    YES! For years prior to getting Mestinon have had ascending back pain if stand very much longer than 5 min. Always started at LS joint and went upward til between shoulder blades and I couldn’t breathe until sit with elbows on knees for 20 min. Pulmonary function tests were falling. Started Mestinon and now after nearly 2 yrs on it can do all dishes, shop in Aldi, PFT has improved 20%. I just know to sit down when pain gets to bottom of ribs. Legs go noodley as this starts so use cane at all times.

    My ego has been crushed when reed thin 84 yo men help me lift stuff or very old women mutter, shake their heads when I use a mobility cart at 66. Really wish MG gave us purple skin so people would understand. A store greeter lectured me on living my best life no matter what little minds might think as she had seen my variable abilities over years.

    • RobertS

      Member
      January 14, 2024 at 10:10 pm

      Good luck to you, this thing scares me more than I care to admit, I am 58 and I cannot go from my truck to the milk isle and back at a walmart without using a cart, I wont make it without something to lean on and help with balance.

      Hang in there, I am focusing on fighting my autoimmune disease as opposed to fighting MG, I think there is more data on ways to push an autoimmune disease into remission than fixing MG.

  • Tim

    Member
    January 11, 2024 at 10:52 am

    Back pain? OH YES! Mine is crippling when I stand for a few moments (doing dishes, cooking, laundry). I have to sit down to relieve it. I now use a stool to sit on in the kitchen just for that purpose.

    I won’t take drugs for the pain as I’m already tired and weak enough without chemically induced stupors. I wish WE had a solution, it would help a miserable lifestyle to at least ebb off the acute pain.

    • RobertS

      Member
      January 14, 2024 at 9:59 pm

      you may benefit from some core strengthening exercises. Before I was MG+ Mayo wanted to fuse my back, but they needed me to do some PT and loose some weight. Lost 60lbs and did some PT and got some significant back pain relief. I crushed L1 and T12, it is a mess up there so exercising my back was difficult but we found a trick. We found a way to strengthen my back without moving my back but still activating my muscles. I would stand in a doorway facing the latch hole, reach out with each arm one at a time and push against the wall but not moving my back. My back would hold against the rotational force from my hand pushing on the wall. Alternate side to side, turn around and lift up on the doorknob or push down, again activating muscles without motion. It really help me get back moving again. Now, I am no superman after that, but I am better than I was. That said, I believe the MG caused alot of my back weakness that drove me to not using it enough and letting it get so far out of shape.

    • paul-spychalski

      Member
      January 24, 2024 at 4:07 pm

      Sign uo for phyical therapy, if you have SS they will help you.

      • RobertS

        Member
        January 28, 2024 at 4:00 pm

        Still working full time and trying to keep up at the homestead so no SS, but I did PT for about 3 months, got lots of knowledge on what exercises I can do and ones I should not. It has helped, but I still have to pace myself no matter how much work needs done, if I over do it, I am usually done in for the day.

  • Bambilin

    Member
    January 12, 2024 at 2:29 pm

    My back and legs are both weak. 10+ months before diagnosis I found myself leaning forward to the right when walking later in the day because of weak back muscles. Core strengthing rehab didn’t help. Rehab did help my legs, then.

    I parked a rollator in my kitchen to sit on. Rolls out of the way easily. Helps a lot to sit now and then. Standing hurt my back long before MG.

    I use a stand-up walker to exercise my legs or to get around when weak. Carry stuff on the seat.

    Tylenol is my friend now and then.

    • RobertS

      Member
      January 14, 2024 at 9:49 pm

      When ever we go shopping, I push the cart, it is my walker on those long distance trips through the store. Recently I find myself benefiting from alternating between ibuprofen and tylenol, in the past I was strictly a ibuprofen guy, but alternating I believe help both be more effective in muscle and body aches Thanks for the info

    • paul-spychalski

      Member
      January 19, 2024 at 9:47 am

      Get a rollator and start walking, don’t let MG win.

      • Bambilin

        Member
        February 8, 2024 at 8:54 pm

        I did, thank you!

  • glen-ackermann

    Member
    January 12, 2024 at 4:28 pm

    I was diagnosed with MG a year ago and about 6 months ago I began experiencing back pain. Turns out I have a central stenosis between my L4 and L5 vertebra. I think it is possible that MG has caused some core muscle weakness which uncovered my stenosis. As far as your neck pain, I think it is not uncommon. Some People with MG have a difficulty holding their head up due to muscle weakness in their necks. It is possible that muscle weakness in your neck is causing your neck pain. You should discuss these issues with your neurologist.

    • RobertS

      Member
      January 14, 2024 at 9:44 pm

      Agree, I see him this coming Friday. Thanks

  • renee-zuniga

    Member
    January 16, 2024 at 9:22 am

    Hi,

    I have had excessive weakness in my legs for several months now.

    My neck also hurts abd feels weak.

    Feet ache / hurt tremendously by the end of the day.

    I cant say my back hurts though.

    Just started back on pyrodistgmine and feel bloated & constipatd conyrary to everyone else.

    Any help or ideas with leg weakness would be appreciated.

    • paul-spychalski

      Member
      January 19, 2024 at 9:49 am

      A rollator(a walker w/wheels), get one. Sometimes a city or Township have them to use…

  • James McCay

    Member
    January 19, 2024 at 2:36 pm

    I DO… MG DIAGNOSED IN 2006, BUT HAD IT SINCE BIRTH. I’M A 2ND GEN. CAMP LEJEUNE VICTIM.

    MG IS AN AUTOIMMUNE DISEASE, SO DAMAGING NERVES ALL OVER YOUR BODY WILL HAPPEN. ONCE ENOUGH NERVES ARE DAMAGED IN ONE AREA; TROUBLE WILL START. I TOO HAVE HAD LONG-TERM BACK PAIN/WEAKNESS. HOWEVER I ALSO HAVE FIBROMYALGIA, DEGENERATIVE DISC DISEASE WITH THE LOWEST BACK DISC (L5/S1) WAS THE 1st TO GO (OUT OF 5 NOW). SO NO TELLING WHAT EXACTLY IS CAUSING MY EXCRUCIATING LOW BACK PAIN FOR SURE.

    IT’S DISGUSTING HOW THE CDC/FDA/DEA KEEPS CAUSING NEARLY ALL DOCTORS TO LOWER OR NOT PRESCRIBE OPIOIDS AT ALL FOR US, ESPECIALLY THOSE WHO’VE BEEN ON OPIOIDS WITHOUT ISSUE FOR 10+ YRS- WHEN NOTHING ELSE HELPED (I TRIED EVERYTHING RX OR ALTERNATIVE MEDS). PLUS I’M 57, THOSE OVER AGE 50 HAVE THE LOWEST ADDICTION RATE OF ALL PEOPLE (WELL VETTED FACT). THE CDC IS ONLY PUSHING HONEST PEOPLE TOWARDS ILLEGAL DRUGS OR SUICIDE IN CASES AS BAD AS MINE! GREAT WAY TO FIX A USA ADDICTION PROBLEM…(SARCASM).

    • celeste-m-matthews

      Member
      January 31, 2024 at 10:33 am

      I hope that you get in on that lawsuit.

      I am in constant pain unless I lay around all day. Rather than opiates, I take gabapentin. It helps some. Not as much as I wish it would.

  • mark-cox

    Member
    January 23, 2024 at 3:24 pm

    I’m 63 years old and have had very similar back issues as described in about everyone’s reply. I’ve been through all the cortisone epidurals, ablations etc. with no avail. Nothing is broken just a little arthritis and degenerative concerns.. I’ve had MG a little over 2 years and if I’ve noticed anything about my pre-existing back pains and neuropathy is that MG has magnified or exacerbated both of them substantially plus the additional body pains especially during colds spells. I can’t stand long either and stay in the car while my wife shops etc. I too have blurry vision and have changed eye glass prescriptions 7 times this year chasing it downwards in which no one has been able to explain other than blaming it on MG. I’m on Vyvgart and plenty of oral MG pills to cope with MG..

    I guess similar to Forest Gumps comment…MG is also like a box of chocolates, ya never know what you’re going to get… In short there are plenty of unexplainables with MG. Keep fighting for yourself and your family and hopefully they’ll come up with better meds, explanations and solutions for MG in the interim…

  • ken-spencer

    Member
    January 25, 2024 at 1:31 pm

    interesting!

    • susann

      Member
      January 25, 2024 at 2:04 pm

      I agree, Ken!

  • michael-chiesa

    Member
    January 26, 2024 at 3:35 pm

    I have same issue when standing at sink or workbench. If I lean over to brush my teeth I can’t straighten back up without intense pain. I didn’t think it was attributed to the MG but have to wonder now.

    • James McCay

      Member
      February 1, 2024 at 11:47 am

      SOUNDS LIKE A HERNIATED DISC POSSIBLY A PINCHED NERVE AS WELL MICHAEL. THE EXACT SAME THING HAPPENED TO ME IN 2010. AFTER HAVING MY L5/S1 DISC HERNIATED SINCE 2001 AND NO AVG. TROUBLE BENDING, MY BACK JUST FROZE UP WHERE I COULDN’T STRAIGHTEN MYSELF & IT WAS EXTREMELY PAINFUL. I WENT TO THE ER FOR THE FIRST TIME IN 4-YEARS. THEY WERE SURE IT WAS THE DISC & SENT ME HOME (WASTE OF TIME AND MORE PAIN). IT JUST WORKED ITSELF BACK TO MY AVG. “NORMAL” IN A WEEK. IT NEVER HAPPENED AGAIN…

      JAMES

    • Jinnie

      Member
      February 2, 2024 at 11:16 am

      My salvation when I’m more active is Tiger Balm extra strength pain patch. I also got a TENS device and full back heater that I plug in when I need to take a break and lie down. I also found out that, if it’s nerves pinching, use an ice pack for the first 24 hours, then switch over to heat. I was struggling to get relief when I just went straight to heat and found out that was the problem.

  • paul-spychalski

    Member
    January 31, 2024 at 2:15 pm

    Are you taking Pyridostigmine??? If that doesn’t work use Tylenol.

  • mark-cox

    Member
    January 31, 2024 at 2:38 pm

    I use J.R. Watkins Pain Relieving Liniment Spray with Menthol and Camphor, Voltaren and Salonpas patches work best for my back pains and other MG related pains. All over the counter or Amazon.. All 3 will give 3-4 hours of relief. Hope that helps..

  • Jinnie

    Member
    February 2, 2024 at 11:04 am

    I have back pain and weakness due to misaligned hips. My weak hips were diagnosed six years ago, just before onset of MG. At that point, I began physical therapy. Two weeks later I had full onset of gMG and had to take a break from PT until I could get diagnosed and properly managed. At one point I was sent to a new Neuro who believed I didn’t have MG and took me off of all of my meds. (I was off of some or all of my meds during a period of about 10 months.)

    Due to continually being weak all over, my misalignment worsened, I’m constantly pinching nerves and my reflexes have become hyperactive. Since then, I’m in an endless cycle of the two making one another worse. My core is out of alignment, (ie, my biomechanics are completely off), so it takes more strength to move my entire core, limbs and all. This extra effort then upsets my MG more quickly. And because my MG is more active, I’m often hunched over frequently, worsening my misalignment.

    I’m glad to find others who have to deal with back pain at the same time as MG. It’s its own thing.

  • TheresaG

    Member
    February 9, 2024 at 2:20 pm

    I’ve had back surgery and neck surgery long b4 MG dx. So the bad back existed.

    That said, I continue with pain, most likely when I am MG exhausted. The weak shoulders put strain on neck, when I drive more than 2 hours have to wear a brace, prevents migraine.

    My L5-SI is bone on bone, again when leg are weak, my back is not supported and I’m in bad pain.

    Remember we are a fully connected structure, only makes sense.

    • paul-spychalski

      Member
      February 16, 2024 at 11:03 am

      Same crap here.

    • paul-spychalski

      Member
      February 28, 2024 at 2:28 pm

      MG= weak muscles that may hve a role in you having back surgery’s.

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