Knackered legs

Hi Lupies,

I was wondering if anyone else has legs that don't seem right. I've been reading up on Myositis and think it could answer my questions on why my legs are so weird!! They don't hurt too much but are so tired they ache. It seems to be centred around my thighs and gluts. It is making walking odd and mildly difficult. The muscles feel constantly tight. Very odd. To begin with I thought it was down to the fact I've done nothing but rest for months and so my legs would be weak wouldn't they? But it's more than that now, so much more.


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  • Hi

    I have Lupus and have had a recent diagnosis of myositis. It took years before anyone would believe me about losing power in my legs, it got to the stage where I couldn't even get out of the chair. It took nearly four years before anything was done, as they kept saying it's lupus and increasing other pills. Thankfully I attended a new hospital and got a new rheumatologist she sent for me to have a biopsy (never showed in my blood) that was sent away and I was given a diagnosis of Myositis. What you are describing some very similar to how things started for me, a feeling of tight socks what how I kept describing it to my partner there was pain and swelling and it was in my thighs just where you are describing. The medication has kept it dampened down but I had years of it being untreated so have a lot of muscle wastage, the physio, say it is maintenance more than regaining. Even though I am now getting treatment I am unfortunately still unable to get upstairs and walking is difficult. So, if you feel this might be what is wrong, please don't be fob off, speak to your doctor and get the right treatment. I hope that I have been of some help to you and please don't worry Myositis can be treated and kept under control very successfully. I wish you all the best please do let me know how you get on. Best wishes to you.

  • Thanks. That's interesting to know. I have an appointment with my Rhuemy at the end of the month so hoping she can help me. I'll keep you posted.


  • Hi All the best at your appointment I'll be thinking of you.

  • Hi angus, my legs are The Problem just now. I know from X-rays I have boney growths in my hips which cause leg pain however it it my calves and thighs that feel so heavy and feel even if they are not , swollen. I am using crutches to distribute my ( normal thankfully) weight through my torso. Years ago the rheumatologist said I had myosotis and I'm guessing it is that. If you look it up, normally it is not painful but for me it the biggest 'owie' just now. (I believe the mind allows one big 'owie' at a time. That goes and the next one takes over! ๐Ÿ˜‚)

  • Hi, I've never heard of myositis, but the symptoms sound similar to what I've been told is maybe fibromyalgia. I too thought my weak legs were down to muscle wastage after breaking my leg, being crippled for months with joint pains and more recently recovering from a knee op. My tired legs mean I limp on most days. It's my achilles tendons, quads and hamstrings that are really tight. I used to play a lot of sport, but can't anymore. I used to get occasional bouts of paralysis in my legs, when they just didn't work and I couldn't get up. The scariest episode was in 2012 when I got up out of a chair and I just collapsed. I didn't lose consciousness. It was as if both legs just switched off. I crushed my left leg breaking the fibula, but couldn't feel both legs for nearly two hours, which was a blessing as I couldn't feel the break, and didn't even need painkillers when they reset the break in A&E. I'll mention myositis when I'm in clinic later this week, and see what the rheumy thinks.

  • Thanks I will be interested in what they say. X

  • Oh heck!!! I'm going through a bad stage with my legs at the moment. Mine is more calf pain and weak feeling, but jelly leg feeling around thighs. I tried reaching up a few weeks ago and ended up on the floor as my legs just went to jelly. Saw a new rheumy last week who mentioned connective tissue disorder as well as lupus and fibro so hope this doesn't develop into more. I thought it was radiating from back pain down the legs. My gp has been brilliant and see him in 2 weeks to discuss new rheumy so if legs still bad I will talk to him about that too. Hope you get sorted quickly.

  • Hi fellow lupie!

    I have had issues with my knees and hips dislocating and giving way, but no muscle pains.. Just have a stiff and out of place feelings sometimes with my hip. If you find out anything can you please keep me posted hopefully knowing can hell me avoid or at least ease this issue if it happens

  • Hello jeanie. Have you been investigated re hypermobility? I mean the types involving joint subluxation (dislocation)?

    This link explains more:

    There are several of us here on forum managing these types of hypermobility

    Wishing you all the best

    ๐Ÿ€๐ŸŒป coco

  • No I haven't. My doctor is very abrupt with me since my spleenectomy. Says the issues with my joints could just be calcium deficiency or I just need to take things easier.. I'll look into this. Thank you very much

  • Good luck. Sorry about your dr's attitude: yikes! ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

  • Hi jeanie94, I too have been experiencing as if I need to click my hip joint it goes like a stiff feeling like it needs clicking into place. This also happens to my ankle but the opposite side to the hip. I recently had a dwelling in my eye lids that only lasted for a few minutes were my bottom eyelashes turned in to my eyeball it was very scary and I came across myositis. I go to see my dermy on Tuesday I'm going to be asked to be refered to a rhyme.

  • Interesting as I have similar issues and was told it was fibromyalgia. My muscles get really tight and my legs feel really heavy and weak at times. I'm also getting burning and tingling feet now...sometimes my hands as well.

    I hope you get the right answer and get some treatment that will help.

    All the best

  • Your symptoms in your legs, feet and hands are exactly what I'm trying to explain. Are they to do with the lupus or are they saying its fibromyalgia as well? I'd be really interested to know as going to a new rhemy tomorrow (because last one was so busy) and I want to be able to explain all symptoms to him. I am very likely to forget so need to write it all down today. X

  • Hi, the pain/tightness in my leg muscles they have put down to fibromyalgia. The burning/tingling in my hands and feet is quite new to me and I haven't mentioned it yet to the doctor. I have a feeling it's some kind of neuropathy. Maybe due to the lupus.

    I hope your rheumatologist is a good one and you take a list. I didn't do that with mine and forgot to tell him lots of things. Also years of undiagnosis made me feel a bit intimidated by doctors. I regret not taking a list and telling him everything.

    Good luck. I hope it all goes well for you. I hope you keep us updated.

  • Yes def write it all down. I've no idea what it's due to. Not seeing my Rhuemy till the 30th.

    Let us know how you get on.


  • I am not an expert, but inflammation is part of immune system problems and it can happen anywhere. I find that if I have been resting and still have problems, it is probably movement I need and not always the gym or vigorous exercise, but general moving about.

    If walking is odd, perhaps if you keep going it will sort out or the body will sort it out. I had terrible joint pains for a while and was avoiding walking, but then I used ruta graveolens homeopathic med. and kept walking and the problem improved.

    Of course, we are not all the same and what works for me may not for you, you have to find what is right for you. Good luck.

  • Hello Alison

    The symptoms you're describing can relate to various things. I've been managing something similar for decades. My medics and I are on the look out for myosotis, but the current theory is that my version of very similar symptoms is down to a typical pie chart of issues (in no particular order):

    -Spondylosis causing lower lumbar facet joint dysfunction

    -spina bifida occulta

    -Synovial inflammation in sacrum joints

    -Hypermobility in joints of the lower back causing repetitive strain syndromes due to loose ligaments overworking

    -Infant onset SLE going without daily therapeutic systemic treatment until my late 50s resulting in tendon tightening

    - etc etc....

    Over the decades, what's helped & is still helping me most to keep these symptoms damped down is (again, no particular order):

    -postural training - my fav being the Alexander technique

    -Regular lifestyle management including gentle stretching exercises like pilates, yoga, tai chi + sleeping on a tempur mattress with a pillow under my knees etc. Also, an antiinflammation diet with high omegas & vit D

    -regular use of orthotic & OTC appliances: memory foam seat wedges & lumbar cushions, Thermacare Lumbar Heatwraps

    -pain clinic facet joint Denervations

    - Intramuscular Stimulation (IMS) a deep dry needling practiced by qualified & certificated physios, GPs, osteopaths.

    -my daily cocktail of lupus meds: hydroxy + myco + pred + amitrip

    -etc sure I'm forgetting something...brain fog...

    Hope something in there is useful

    Thanks for getting a great discussion going๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

    ๐Ÿ€๐ŸŒป coco

  • i have similar feelings, for the last 6 months or so I have had difficulty getting up from sitting, walking etc whereas normally I am an active person. I too have been resting as I am recovering after a three week stint in hospital with septicaemia. I don't know what is best, to push myself to re-develop the muscles or not. My ankle and knee joints feel like they are being unduly stretched when I bend them and are more stiff than usual.

    Hope things improve for you soon.

  • I have this, too. My rheumy suggested it was deconditioning because I was too sedentary. I balked at that because even though I may not be jogging or engaging in heavy cardio, I walk to the park and on trails with my three year old several times a week. My house has five sets of stairs that I climb daily, yet my limbs are heavy and shaking after I walk up ten steps and I am out of breath and sometimes have to stop and rest. She checked my lungs and did a full body check. Then she checked my muscle tone, which is good. She checked for fibromyalgia (I mention all these so you can be checked for them, too). In the end, she reviewed my sleep. For the last three years, between having a baby, a few major surgeries, a husband with untreated sleep apnea, midnight crohn's attacks, insomnia and anxiety, I wake up between 2 and 5 times a night, sometimes for moments and sometimes hours. She believes I've got accumulated sleep deprivation and am clinically exhausted. She offered sleeping aids, but because of the little one, I can't be out of it at night. So, she threw my husband out of the bedroom (and to a sleep clinic), we're treating the Crohn's, introducing early evening cardio (recumbent bike) and a firm 8 hour sleep schedule where my husband is to attend to any night happenings unless it is an emergency.

    Its been less than a week - I have had four uninterrupted nights and two that were interrupted by my sore tummy. She said it will take a month or so. She also increased my Vitamin D to 2000 IU's a day and told me to be firm about my sleep. Will it get better? There's no question that the nights that I slept through, I didn't notice my legs or my breath as much. I'll post in a month! Good luck, hope there's something useful here for you.

  • Hello Alison, I was diagnosed a year ago with mysotis in my left leg, from the hip to the knee. I am on 20 mg methotrexate and still taking the steroids but I sympathise totally with your pain, this time last year and I could not climb a kerb stone let alone stairs to our bedroom. I needed an 1/2 trip to get to bed. At the moment I get very tired legs and find sleeping difficult when this occurs. But I have the use of my leg back, I can climb the stairs and kerbs. But I do get tired very quickly but feel lucky to be alive. No matter how much rest I get this does not go away. It am learning to live with it. Wishing you the best

  • Hi

    I have symptoms but no specific diagnosis. I got referred to rheumatology because of on top of fatigue symptoms and elevated ANA I had elevated CK. I also had what I felt was weakness in my muscles, especially my legs when trying to lift my body such as step up on to a stool or get out of a chair. I started to look like my mum, who is 40 years older than me and in her 80's. I I was doing the rocking thing to get going. I also found walking distances hard work, taking longer and basically hard work. They still query Myositis and that would explain the slightly increased CK.

    I regularly felt my legs twitch and feel tight. Ivan only sit in a car, as a patient or driver for a limited time before my thighs begin to get tight and hurt.

    I was lucky, my CKwas slightly elevated enough for them to take notice. I understand athletes can have raised CK of a similar elevation but I was being anything than sporty like you I wasn't able to maintain normal activities.

    The meds I started helped and I hope this gives you hope but I've been painting this weekend. Yes I ache a bit and I have a lot more rests than I used to but thanks to the meds and pacing, I can.

    Next time you see someone ask them if they have checked your creatine kynase and possibly your LDH. ( not LDL, that's lipids)

    Your not mad, your making sense x

  • An update. I was going to ask about myositis when I saw rheumy today.... for first time in a year. But as often before, today's rheumy was a new guy I'd never seen before and was not familiar with my history. So we spent a lot of time going through a lot of stuff, and I didn't have time to slip in anything about myositis. Interestingly, he thought I should be in the psoriatic arthritis clinic, not the rheumatology-lupus clinic. But said, he'd have to discuss this with his more-learned colleagues who'd treated me over the past three years. He was a young chap, so probably has to seek senior opinions, but to his credit, he did seem to listen and did at least examine me. Sometimes, I just get talked at and get the impression no-one's particularly interested. Either way, he wanted me back in either clinic in two months. So at least it looks like I'm back on their radar.

  • Sounds positive, keep us posted and good luck with the newby.

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