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Discussion Starter · #1 ·
Does anyone suffer from this? Im diagnosed with Lupus (SLE) and Fibromyalgia. Im doing really well it seems and have virtually stopped all medication.
I was hoping after stopping the steroids the muscle weakness might improve but it hasnt. Its been 3 weeks now.
I have an overall general weakness and after sitting or standing for any length of time I ache. I have fatigue all the time too.
The legs are the worst and I have trouble getting out of the car and its nearly impossible to get up unaided if I sit on a low chair. Ive also not been able to take a bath for years (I have showers in case your wondering lol). I dont actually have a bath in my house. I used to love a bath too.
I find it nearly impossible to get in a bath and definately totally impossible to get out. (I was mortified the last time I had a nice relaxing bath at my daughters and I had to shout for her to get me out.. very indignified.) Since then Ive never tried to have a bath again.
Ive had this weakness for years its not a recent thing. I sometimes wonder if I am as better as I think or Ive just got used to living with these symptoms.
Just wanted to see if anyone else suffers like this as I have my Rheumatologist appointment soon and dont want to just breeze in and say Im better because he will just say Oh thats good and send me away for another 8 months.
Im doing good compared to what I was but I feel I have to push my way through everyday to make myself get things done. Everthing is such an effort and Ive forgotten the day I had any real energy.
Id like to walk to aid some weightloss but that feels like I am walking through treacle. Also I have to grit my teeth and go for it to get up steps and stairs.
Now Ive written this down it doesnt sound normal does it?
Perhaps it is just something you do have to live with though with Lupus or Fibro. I always just put it down to that.
Perhaps everyone does suffer similarly and Im just being a whinger. Perhaps you can never expect to feel your old self once you have this.
I also get very breathless after very minimal exertion. There is nothing really wrong with my lungs though in the congested sense.
Any imput would be gratefully received.
Thanks
Sal x
 

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This is definitely something you need to mention to your rheumatologist, and you must convey the severity of it and how it is affecting your life in the ways you just listed. If you just say "muscle weakness" without saying "I can't get up from a seated position" then it won't be taken as seriously...

I do not suffer from such muscle weakness - so I can't help you with personal experience. There certainly are a variety of possible causes for it (including some medication side effects - what medications are you still on?).
 

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Sal,

Please don't let this go unmentioned to your rheumy!! Oh my goodness what misery you are dealing with.!!! You most certainly are not a whinner!!!
This just does not sound right to me at all!! By all means tell your rheumy.
Hugs to you,

annada
 

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(((((((((sally)))))))))

you're not whinging at all! :hug: I agree with maia and annada you should mention this to your rheumy.

I can relate to how you feel as I also feel quite weak, get breathless and don't have much strength at all...I can't get out the bath alone I have to lifted out, I did find myself stuck in it many years ago when my hubby was out for the night &I realised I just couldn't get myself out of the bath anymore :eek:
after a few tears, my daughter put her little plastic chair in the bath & I managed to struggle my way out! no need for any firemen thankfully!!! :) or unfortunately :wink2: :hehe:

however sally I put my weakness down to my joint problems and I can manage to get up from a low chair so I would advise you to get checked out.
please let us know how you get on
take care..love karen x
 

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I suffer like you with severe muscle weakness, right side worse then left.

I have had EMG studies done and there is a lot of nerve damage so I attribute it to that.

I am also a smoker and while short of breath it is not nearly as severe as you.

Please mention this to your doctor.
 

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Hi Sally,

Yes I do have that type of muscle weakness. Mine is a polymyositis overlap. That's pretty rare but it does happen and it sounds exactly like what you're describing.

Your rheumy definitely needs to be told.

Katharine
 

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Hi Sally,

When you have muscle weakness you do use extra energy which just increases the fatigue you already experience. Many a time I got out of breath just going from the bedroom to the kitchen. Until recently stairs have been out of the question. After a couple of stairs the legs just gave way. What you are experiencing is definitely not normal and needs to be investigated. Maia is right, you need to stress how the weakness is impacting the things you need to do each day.

Good luck with your appointment.

Take care,
Lazylegs
 

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does this sound familiar to anyone?...

hello,

i'm new here and new to lupus or so i thought... i have recently been diagnosed and i'm still finding out about it. this site is really helping me. today, i am experiencing pain, well, i'm not quite sure how to describe it but i'll try, its mainly the area under my arm, kind of the side of my ribs on one side only, well it feels very stiff, heavy, achey, tense almost and dull, its almost difficult to lift my cup of tea with my arm from that side! normally i would have put this type of pain down to having slept in an odd position or just from pulling something exercising etc but now i'm wondering if its the lupus??... Also, what lazylegs said about 'legs giving way' well a few years ago this happened to me a few times but it was only ever during the night, if i got up from bed to go to the loo, i wouldn't even make it to standing position as my legs would literally be like jelly and i would find myself in a heap on the floor unable to move my legs, if i wanted to move them i would have to pick them up with my hands! this would last for quite a few minutes or so until the feeling and strength returned... do these sound familiar to anyone or related to lupus i wonder?...

Sally - i think you should definitely tell your doctor exactly how you feel, what you are experiencing and how you are coping, it can't do any harm and surely the more they know then the more they can help you on your way to recovery, i hope you feel better soon.

thanks, smiles x :)
 

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Discussion Starter · #9 ·
wow.. Ive only just got back here.. been very busy. I looked the first day and thought eeek nobody can be experiencing what I am.
Its a bit bad when a 75 year old man says are you ok? when Im trying to carry shopping in to my house.. I have to put shopping on each step then get me up pick up shopping to next step the climb it myself. I cant lift me and shopping at same time.

Karen.. Me and you have similar history. Being diagnosed with RA for years then Lupus.

You are all making me wonder now. Have I been playing this down? Its such a pain. I cant walk properly. Im good at the moment too. What is this? Ive come to accept it as normal. I have to sit on high chair else I look a wally when I get up. Most times I can hardly get up.

You know when you have only a little space in car parks to get out of the car. I have a real stuggle. Of course I cant park in disabled for more room.
Great when the grandchildren are with me I can park in mother and baby spaces.

My little grandson 4 says.. Ill help you up Nanny. Then I really have to get some strength.. Wouldnt want him to think he wasnt helping. aww

Thankyou all for your replies. Has made me think. Perhaps its not Lupus or steroids maybe it does need looking into.

A week to go.. Rhuemy appt. They are few and far between these days with our national health service but I wont complain. At least we have one.
8 months since the last one. Should have been 6 but they put back the appointments so many times.

Cheers guys.

Luv Sal x
 

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Hey Sally,

Just rereading your description and I'm thinking WOW, yes, you are definitely playing it down and there was me thinking that it's annoying not being able to write on the board, sit for long in a straight chair, have a LITTLE difficulty getting out of chairs, putting on sunscreen (a lot of my weakness is arms and upper body - hence the breathing issues too)...for the bath I have devised my own special sort of method even if I usually take showers... but I'm a long ways from being as bad a you are (and things have greatly improved these last three weeks). I did get a pasage of having my legs being very bad but it was at that time that my bloods suddenly went belly up and I had a rather worried rheumy all of a sudden. it quietened down after.

Sorry, can't shut up can I...all I wanted to say is, an additional thing to maybe ask the rheumy for is a special muscle reeducation programme. Physio, hydrotherapy, oldies gym...as it is essential to keep the muscles working in some way.

bye again,
Katharine
 

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Hi Sally,

Do you use any type of aide such as a cane or a walker? Just having that extra support will help me get to a standing position easier. Another thing that helps is practicing getting up and down from a chair during the day. Usually I will do it 3 to 5 times in a row 3 times a day. The legs really quiver but it does help keep some of the muscle tone.

Take care,
Lazylegs
 

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Hello there,

I'm 39 and dx with lupus for 3 years. I experience all the same symptoms as you and after many docs I've had little in the way of finding out what is causing it. My lupus doc is great and I see her often but the weakness in my legs is very puzzling to her. My muscle enzymes are normal but I can't get up from sitting most of the time without using my arms to push me up or asking for assitance. It is the craziest thing because I'm somewhat fit but like you exercise is almost impossible due to the fatigue and shortness of breath it causes.

I hope someday we all get some answers.
 

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Discussion Starter · #13 ·
Huh.. Im in denial. :) Oldies gym? Walking aids? Has it come to this? :sad:
Just kidding.. all very good advice. xxx

Thanks Lazylegs I am much more active now Im not in a flare so was hoping my legs would be strengthening up a bit now but suppose I should do more exercise. I think lazylegs is my middle name lol.

I will mention this when I go to appointment next week. I consider myself a youngish 54. I cringe at the thought that I would have to use any walking aids. I struggle on the best I can at the moment. It seems I may have something wrong though by what youve all said its not just normal to Lupus. Until last year I was diagnosed with RA and I read that that could cause muscle weakness so I put it down to that over the years.

Thats interesting Jenkay that you have the same but they dont know what it is either. At the moment I too use my arms to get me up from sitting but when I was in a flare my wrists elbows shoulders etc were too painful and weak to use so thats the time I couldnt get out of bed or up from sitting without help from my daughters. If I find any answers myself I will let you know.

Dont shut up Katherine please. Your input on these boards is always very interesting and helpful. I should try to go swimming more because that is very good I agree. I used the hydratherapy pool when I was in hospital for 2 weeks before I was diagnosed with Lupus. That was lovely I could have stayed in there all day as I was in a bad flare and it really does help your joints and muscles.

Now youve all convinced me this is something that needs looking into more I will persue it. I suppose Ive just adapted to it rather than finding out what it actually is.

Thanks again for all your helpful input.
Sal x
 

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Interesting timing for this discussion

I have lupus and APS. I grew up with juvenile arthritis. Never been physically strong but growing up an only girl in a large male extended family, it never seemed to be a big deal. Fast forward to today. I have CK levels always in the 300-400 range ( 170 is the labs upper normal)
My 13 year old son was born at 26 weeks and has muliple disabilities including spastic quad cerebral palsy. At the last visit with his PMR doctor, I pointed out that it was weird he was devoloping one muscle in his arms. I really was surprised when this unflappable doctor's eyes crossed and he said that Alex wasn't developing a strong muscle but the muscles surrounding it were atrophing. My dad, who is a first generation American ( meaning we have little in the way of family medical history) was dx with FSH musclular dystrophy 12 years ago when he was 70. Since FSHD is genetically related the doc checked me over as well and said I was showing mild/beginning signs of it as well. Alex took a blood test to rule out FHSD. If it is positive, we will recieve genetic counsling...not because hubby and I are considering more children ( we have had 7) at the age of 55 but because the siblings will be able do family planning knowing this does exist in their genes. Some like my dad are surprised in the twighlight years and it will not effect their life span. I'm more typical for FSHD symptoms devoloping in early middle age. My son, if he has it would typical for the very beginning stages. If an infant shows signs it is usually fatal.
Looking on the bright side for my son, if he has FSHD, there will be a day, week, month, year in the future when the spasticity will be balanced by the weakness and he will be just "normal" what ever that means.
The point of this missive is not everything can be blamed on lupus or auto-immune disorders. If you are having trouble with muscle weakness it wouldn't hurt to be seen by a neurologist who specializes in neuromuscular disorders.
Joanne
 

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Discussion Starter · #16 ·
Ive looked up Polymyosotis that some of you have mentioned and that does sound very much like what I might have.
My goodness will it never end?
Appointment in a week. I will mention it all and hope for some joy.
Thanks
Sal x
 

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Salopsally;516434 said:
Thank you Joanne,
You do have lots more to cope with than me.
Best wishes and love to you all.
Sal x

No thanks needed.
Hoping my message didn't get lost....not everything is lupus related. Like the doc said yesterday, we get a dx and then blame everything on it. If you have trouble rasing from a chair or significant muscle weakness check in with a neuromuscular doc.
You could be treating "lupus" symptoms and not getting any relief because you are treating the wrong disease process.
Joanne
 

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Hi Sally,
I feel for you. I have the same problem with muscle pain and weakness in my legs only. I also have been diagnosed with Fibromyalgia and Lupus. The Lupus took 5 years to diagnose. I finally got diagnosed in May 2008. I am on Plaquenil 200mg twice a day for 8 weeks but have noticed no difference yet. Some days are worse than others. I know what you mean getting up from a sitting position or our of a car is virtually impossible anymore. I dont know what happened. My legs always were so strong. My Rheumy told me to go to the gym and work the machines for my legs to try and strengthen them. Have not tried yet, also very tired and cant get myself to go. I am a Medical Assistant for a busy Cardiology group and am on my feet all day and I am finding it more difficult to function due to my leg pain. I also get a sensitivity in my legs around the muscle pain. It almost hurts to touch my skin. I dont know why that happens but a few weeks ago it happened to my face, half of my face was numb and sensitive to the touch. Did not lose my vision or have slurred speech so I wasnt too concerned.
Well my suggestion is to try and do some form of leg and arm exercises to strengthen the muscles even if its 5 minutes a day. I am going to try going to the gym today for a little bit. I do have a menbership but have not gone in over 2 months because of my pain but the Dr said the longer I sit around, the stiffer I will feel. Lots of luck to you. Keep us posted.

Kim
 
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