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Newly Diagnosed - Muscle Spasms and Neuropathy

Discussion in 'Newly diagnosed' started by DizzyGirls, Sep 17, 2016.

  1. DizzyGirls

    DizzyGirls New Member

    My daughter was finally diagnosed this last week for SLE. Among her worst symptoms of this horrible flare are very severe muscle spasms and intense neuropathy. When she tries to relax in the evening and into the night, these muscle spasms kick in. They are so severe that we've made multiple trips to the ER for IV meds. They usually give her Diazepam for this, but it's not working as well and she's starting to look like a junkie from the IV pokes. These muscle spasms take her abdominal muscles and stomach and twist them all in knots and hard as a rock, they then work up to her neck like someone has her in a choke hold and she can't breathe. Then to top it off she has the most intense burning pain in her hands and feet, sometimes other places, too. She's on neurontin for that, but it's not touching it lately. ER docs don't know about lupus.

    Does anyone have muscle spasms this severe? What do you take for them? Also, the neuropathy...what do you do? My daughter just took her third dose of Plaquenil, but I know it takes quite a while for that to start working.
  2. mark176

    mark176 Active Member


    I did have muscle spasm as well as hot pins. However, nowhere near as bad as what your daughter is experiencing.

    Once the plaquenil started to work 95% of problems went. If it is as severe as yu state, you may need a stronger immunosuppressant.

    Is a steroid injection an option? This might give some releif. Not sure though how effective steroid is against neuropathy. Also you need to get some baseline tests on eyes done whilst on the plaquenil.

    Kind regards
  3. DizzyGirls

    DizzyGirls New Member

    Thank you, Mark, for your reply! A few years ago both of my daughters had an injection of celestone. It helped my youngest (not the symptomatic one at the moment, but more so then), but didn't do anything for my oldest (the severe one now). It seems the tables have turned and I was going to make some phone calls to some doctors to see if I could get an injection of some sort for her or she's going to end up in the hospital. We also have an upcoming appointment with a neuro-opthalmologist, so that's perfect timing since starting the Plaquenil.

    Any more thoughts or suggestions are always welcome. I've done a lot of research on different things, but am relatively new to the Lupus world.
  4. mark176

    mark176 Active Member


    My Rheumy tried a steroid injection 160mg at the start and I'm going to be honest it did nothing for me. When I asked him about it, he replied that it probably wasnt strong enough. I remember starting oral steroids shortly after.
    15mg gave releif for 6 hours. We eventually put it up to 40mg. Its now well controlled with HCQ and no steroid.

    Hope that you get some help soon.

    Kind regards
    wolf1 likes this.
  5. DizzyGirls

    DizzyGirls New Member

    Ok. Thanks for the suggestion. She was on 20mg of prednisone for about 4 days to see if that would help, but it made her tachycardia so bad that she had to stop. Also it didn't seem like it was helping. If it had been helping, could have probably done something for the tachy. I wonder, though, she's really sensitive to medications, if a lower dose would be more of a happy medium, and it might help. Thank you!
  6. lazylegs

    lazylegs Moderator

    Your daughter's spasms sound pretty severe. I am wondering if they are part of a movement disorder. The neurologist should be able to sort things out.

    My spasms are nowhere as severe. Initially I could move the opposite direction of the spasm and it would stop. When I began getting them more frequently the doctor worked to get my potassium, calcium, magnesium and vitamin B levels in the normal range. Next we began adding medications. Mirapex for the restless leg which also relaxes the muscles, gabapentin for the neuropathy, baclofen for the muscle spasms and Propranolol for the tremors. When that isn't enough I apply heat, massage and sometimes weight to the area. The one problem is not being able to take the medication during the day as I get far to drowsy to function.

    I hope your daughter gets some answers at her upcoming appointment.

    Take care,
  7. Tmember

    Tmember New Member

    Bananas are good for preventing Charlie Horses (leg/foot cramps). One a day should help (supplies potassium). You can get some Hyland's "Leg Cramps" pills at the Health Food store but I don't know if they work or not, haven't tried them quite yet. About all I know about leg cramps is how badly they can hurt and that if you get the minerals you need you shouldn't get cramps any more. My heart goes out to anyone who has these leg or foot cramps!
    Last edited: Oct 1, 2016
  8. lazylegs

    lazylegs Moderator

    Thank you for the suggestions but I have already been nutrition route. Mine appear to be more due to nerve damage like you would see in an MS patient.

    Take care,
  9. I have recently had the ankle to glutes pain, spasms, I didn't want to get out of bed. Weird sensation in feet to pain in ankles, spreading up back of legs with pain, weakness.
    It was here severe, now intermittent. Going down the 9 stairs was horrible.
    I tried everything except Epson salt baths, fearing it would send the legs into horrible itching and rash.
    I also tried diet and exercise. As I have never had a Charlie horse, my daughter told me, that they don't last this long.

    I don't have any other answers, except milk, banana and magnesium.
    I try natural before meds. But, at this point in time, with the non stop roller-coaster, I'm out of my favorite naturals.

    I do hope that after this time, you have found answers.

    Take care.
  10. lazylegs

    lazylegs Moderator

    Hi Penny,

    Since I had spasms all over my body, some in areas I couldn't figure how to stretch out, I resorted to medication. Right now I am using a low dosage of Baclofen on a daily basis to keep the spasms at bay but when I am in a flare up I go to a higher dosage. It definitely helps however in some people after time it loses its effectiveness.

    Take care,
  11. Lazylegs,

    I would never think differently of someone who is on meds.
    We certainly have been through the ringer with this.
    I know that so many have been and are so much worse than I am.

    And I can't control it with anything, I try, but I am overwhelmed and I know from what everyone else has said they are.
    You can't live on all the OTC stuff, that probably ,we've gotten so used to,
    it doesn't work , it's more garbage to put through our livers and cause more damage.

    I wish I could stretch mine out, but it just takes time. I do all the things I know, but I am at a loss too. Doesn't mean I don't try and wish.
    I am ready for my rhumy to do something tomorrow.
    I feel like the prednisone made everything worse instead of better.

    If I haven't tried it and see something that someone else does or tries, I try it.
    Between the muscles, rashes and itching, I am going nuts and don't have time to address each 1, with things that may or may not work. ie: baths, oils, essential oils, more foods, less and diet stuff.
    And handful of OTC that doesn't work.
    I do what I can and have choice words when I can't.

    Take care and I wish you a good day.
  12. mark176

    mark176 Active Member

    Hi Penny

    I too found the Prednisone caused problems with spasms and other neurological problems. Once the other rheumy meds kick in it should get better. I found a banana useful for the muscle spasms.

    Kind regards
    loopie017 likes this.
  13. loopie017

    loopie017 New Member

    When we started thinking something like a chronic illness is something I was dealing with and started going to doctors for a diagnosis, my first stop was a GI doctor.

    I had such bad stomach problems, we were suspecting and guessing that I had something like Crohn's / UC.

    I never tingled before this, but I had one of the worst flareups of my life when I had a colonoscopy. Dear god in heaven, I had no idea what was going on then. I think it was my first "unusual" outbreak for lupus.

    I honestly thought I might have had a mini-stroke. My hands went numb and LIMP, my adrenaline was the only reason I was able to hold a pen to sign forms, and had better penmanship when I was 5 years old. My body felt woozy and tingly. My body felt like it was "collapsing" or something - very horrific experience. I know now intense procedures / surgeries are something major to watch out for for me! I can't stand heavy radical environmental changes. I also think the fasting and laxative part of the colonoscopy contributed to the experience.

    After that experience, I got referred to a neurologist for suspicion of MS by my GI doctor. Consequently, tested negative for MS.

    The worst part of the tingling was how it was worse at rest. This drove me crazy, as I couldn't even relax properly when I wanted to.

    At first I thought my bed had some bug infestation. Then I knew it was something else when I got the muscle spasms / twitches.

    It has strongly diminished for me in the long-term. Good medications, nutrition, exercise, and destressing helped eliminate this issue for me. It also helps to evaluate if anything in your environment is silently contributing to your symptoms.

    Don't get me wrong, it's not completely eliminated. A few days ago I went through a mini-flare and felt the tingling / burning comeback, along with other different lupus symptoms (no muscle spasms, thankfully), but it quickly vanished. Just reminded and reassured me that it's just lupus doing its thing... :(
    Last edited: Feb 18, 2017
    Penny Mathieu likes this.
  14. loopie017

    loopie017 New Member

    I know Prednisone can cause neuro problems, along with a host of other issues. For me, it was the key (Medrol, really) that showed me and helped me get away from the neuropathy / muscle twitching, spasms (along with other issues). It broke the "cycle" in my body doing that for a while, so it told me it's helping some kind of auto-immune inflammatory problem. I've only used steroids for short periods, my doctor seems pretty good about being conservative with handing them out. I'm glad too, I'm at least a bit uncomfortable while on them always. I haven't had to use a pack since taking Plaquenil either, thank goodness. Hope it stays that way. But for these reasons, I'm appreciative of the steroids.

    Bananas help(ed) me lots too.
  15. Bugs in the bed. ..... I thought so too. I washed the sheets,mattress cover , down comforter and pillows. Steamed the mattress.
    I thought that was causing the insane itching on legs and scalp. Had my hair cut twice, I knew they wouldn't touch it, if there were anything there.
    I washed my hair, didn't wash it... was told my scalp was just dry. Oil treatment, still itching.

    I have used moisturizer and coconut on my face, just so it could still be tight and dry in a couple hours. I carry moisturizer in my purse, so if I'm out, it's there.

    The weather is changing again, so I know something is going to not clear up or it's going to do it's thing. I hate the weather to change drastically.

    I don't even want to think about how horrible you felt.

    Penmanship, when I was working, I had to decipher what I wrote. I had nice writing, now I can read it and sometimes others can.

    I hope you feel better and thank you for sharing. I don't feel so crazy now, my family thought I had lost my mind. .....
    My legs started hurting, like I ran a marathon, all the time. I don't know what is worse, the legs or itching.

    They put so much into labs, knowing not everyone has a positive reading all the time. That makes me crazy. I looked back at records and found that I have been to this pcp, for the symptoms since before 2011. That doesn't include the neuro, rheumatologist, quick care, chiros, previous pcps.

    Can we tell, after all the years in the medical field, I am frustrated with it...
    Last edited by a moderator: Feb 24, 2017
  16. Ceashell429

    Ceashell429 New Member

    I've been diagnosed for 15 years and I just now recently began with the muscle spasms. Yesterday so bad I went to the ER. Sorry your daughter is suffering. I'm used to the achiness. But these spasms just suck!
  17. wolf1

    wolf1 Registered

    I'm suffering with jerking a lot. It can wake me up when I'm sleeing (when I sleep) or I can be watching tv and my whole body will just jump. Cramps in my feet and hands too. A lot of it starts when I'm relaxing, palpitations come with it also.
  18. kayva61014

    kayva61014 New Member

    I have A LOT of muscle spams and lots of nerve pain but your daughters sounds very severe.

    My spasms are just more annoying.

    I hope you find out something. This disease is just... crazy.

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