I've been experiencing weakness in my thighs for several months. Some days it's hard to climb stairs. On those days I also get out of breath.
I thought it might be due to less activity and deconditioning but then I think back to when I was bedridden for months 3 years ago and it didn't feel the same.
I've had a nerve conduction/EMG test that came back normal. So I know it's not myasthenia gravis (my hubby has that and I don't have the rest of the symptoms).
I think that might rule out other conditions too.
Any ideas what this might be?
I have also been experiencing weakness in my thighs and to some extent my lower legs. This has been going on for a while now, but not real sure when it started. Probably 3-4 years but a lot worse over the past year.
At first I thought it was from not using them as much because I was on some heavy duty drugs for 48 months and the drugs wiped me out completely so I basically could not do much. I know I have some muscle atrophy. However, since January 10th I have been going to physical therapy for tendonitis and bursitis in my hips and things. I have been doing lots of strengthening exercises. Things seem to be improving in the strength department but my thighs are incredibly fatigued all of the time, just standing and doing nothing. The fatigue is not improving.
I have come to the conclusion that the thigh fatigue is Sjogren's related. To me, the fatigue should be getting less with the PT I am doing. Instead it is the same or maybe even worse. I am going to discuss this with my Rheumatologist in April when I see her next.
(As a side note, I am having an EMG on April 9 for other reasons. Maybe it will shed some light on the matter, maybe not.)
I too have the thigh/leg/arm fatigue. I have told the doctor in the past that some days I can go to my basement with a load of laundry and on my way back up the stairs have my legs feel so fatigued you would think I just rode a bike or walked the treadmill for miles. As well as being winded. I too had attributed it to decreased stamina/deconditioning, but have since concluded it must be SJS related. My arms feel the same way when I shampoo my hair and forget blowdrying it, that is maybe a twice a yr occurrence with it being clipped up the rest of the time.
Hope it gets better for you, take care Mary
Could it be a side effect of Plaquenil?
I have lots of thigh, and upper arm fatigue. Sometimes I can't lift a dinner plate, let alone pull the roasted chicken out of the oven. I have tried physical therapy to try to improve muscle strength multiple times, and 2 rheumies have concluded that this is not a useful strategy - it just exhausts me. My current rheumy says that she sees this some of her Sjogren's patients.
The only thing that seems to help with the pain associated with this is LDN. It helps the pain, but not the weakness.
Thanks for everyone's replies. Sorry that we all share this though!
Nannysbaby - I had the weakness before I started plaquenil so I don't think it's that.
Warmwaters & Gemini - I also have arm fatigue now that you mention it. It just doesn't seem as bad. When I get up in the morning, it's my thighs that feel as if I've been on a bike all night. They're sore (as are all my muscles) but not that burning pain from exercising. Mostly that exhausted muscle weakness where you feel like they could collapse on you if you're not careful.
My hubby has nicely inquired why I don't wash my hair more often (that's what ponytails were invented for!). I said my arms are weak and it takes so much energy. Which he should understand as he has MG!
I blow dry my hair flipping my head upside down while leaning on the bathroom counter so I don't have to really lift my arms. Doesn't help the dizziness though!
I have had myasthenia gravis since about age 20 and it was not diagnosed until 2006 when I was 63 years old. I had been checked for it earlier and had negative AcHR and negative EMG. However, I was weak and it went in spells.
Well, when my eye started drooping I knew that something was wrong. In fact, I had wondered about MG for years but docs dismissed my ideas. Surprise!!!!
The weakness of Myasthenia gravis is arms and legs, trouble climbing stairs, using hair dryer, lifting pots and pans, dropping things, etc. Also, for years I would have times when I would feel like I was going to quit breathing and would rest and use my inhalers. Docs said it was my asthma. Don't let anybody tell you that it isn't MG until they prove it to you. Get an aggressive neuro who knows how to think things out and work with you.
Granted, sjogrens can cause some weakness, but it doesn't cause Myasthenia crisis which is when you go into respiratory arrest and need to be put on a vent. Check the weakness out. Also, blurred vision is a huge component for me at the end of the day. Irish
Thanks for the food for thought, Irish.
My hubby has very severe MG and has had the myasthenic crisis. He's on full disability because of it.
I just never thought I'd have it as his is so severe and my symptoms are so mild in comparison. My nerve conduction/EMG was for muscle twitching and jerking, not weakness.
I know about the blood testing not always indicating MG but not the EMG testing.
My rheumy prescribed flexeril for my muscle twitching last summer. I could hardly move and spent 3 days on the couch with extreme weakness. I know flexeril is really bad for MG.
I have a neuro appointment in April. I'm definitely going to pursue this.
I'm sorry you didn't get diagnosed for so long. That sounds intolerable!
It could be polymyositis which can occur with Sjogren's as part of a mixed connective tissue disorder.
The rheumy I saw at Mayo Clinic in January thought I may possibly have a mixed connective tissue disorder. I was tested for MG but don't have it. My EMG and nerve conduction studies were normal at Mayo and they can be.
Polymyositis can cause weakness in the thighs and in shoulders, very similar to MG.
I have been on Plaquenil for two months now and I am feeling better since having issues since May and being out of work since the end of September. I am going back to work at the end of April and I am hoping to stay feeling decent.
Good luck,
Brooksie
The symptoms you describe sound much like my own. My Rheumy tells me it's Fibromyalgia, but I can't say that I am convinced of that myself.
I hope you get some answers very soon.
This whole post was meant for me to see today :-\ I have such weak thigh and arm muscles, and hands, but have blamed it on a mild form of myositis I have, but I requested to be worked up for MG. As I have several other autoimmune diseases and have had biopsys of nerves, muscles, skin, and now the lip for sjrogens. I have every symptom of MG. Waiting for the blood results to come back and trying to get a referral to a neuro with neuromuscular specialty. I also have had emgs, the nerve cond tests, and I do have sfn, but the weakness is so unpredictable, it can be not to bad one min, and then awful the next min. I have been told it could also be from the sjrogens, the sfn, I also have hashimotos encephalopathy, so there is something to blame it on, but my neuro right now, just is not with me on this, and I need someone who specializes in MG. I am so glad that you all were discussing this thank you.
Thanks everyone for the continuing input.
I researched the possibilities you've all mentioned and none seem to fit exactly unless it's at a pre-clinical level.
Susie - what are your symptoms for your mild form of myositis?
Whenever I mention the weakness, my rheumy does the standard physical tests (pushing and pulling against her, etc) and my neuros have done that too. I'm not that weak that I can't push or pull back at a consistent level for the few seconds they do it. So none of them are taking it seriously.
Maybe it is part of Sjogren's or fibromylagia (which my rheumy suspects I also have but hasn't gone so far to say I do as Sjogren's symptoms can mimic fibromyalgia.
It's interesting that some of you didn't fare well with physio. To me if it was fibro or SJS, there should be some improvement if done carefully and slowly.
I'm going to my PCP Wednesday and ask her about this and about whether she thinks physio is worth a try. I'd like to find out if it can improve or not.
I have had the terrible weakness in legs, arms and hands. Had every test and bx. I am almost 100%
Better since starting methotrexate and Ivig. How long it will last....that is the million dollar question!
Good luck! It is a long process and a good neuro and rheumy are very important!!
Hello DaisyMae,
to answer your question, I was dx with myositis, about three years ago. I have had a positive ANA speckled for about six years and kept having dxs change on me as I am sure a lot of you have had happen. Well my legs were getting so bad I could not walk up a curbing. Stairs were imposiable to do. My arms to wash my hair was a chore. To blow dry it was impossiable. So they kept checking me for it, but my cpk blood teset kept coming back negative or normal. They did a muscle and nerve biopsy and I did show muscle inflammation, then about the same time my cpk came back elevated, not like somepeople who are dx but it was above normal, and so I was dx. I could not get up out of a chair by myself without hanging on to the chair. I might be able to do it once but then not again. I am better being on Imuran. But I still have days of the weakness and pain. But then small fiber neuropathy can also cause weakness and pain in muscles so it is hard to tell. I hope you find some answers because it is so upsetting when no one is listening. I know.
DaisyMae,
As I've mentioned in a few other posts, I'm an endurance athlete who was training, racing and doing 100 mile rides, all while feeling strong and energetic. Out of the blue, I started having days that I couldn't even climb the stairs to my apartment. My legs and arms were weak, I was extremely fatigued and had shortness of breath. I wasn't on meds and never heard of Sjogren's when this starting happening. Had no clue what was wrong with me and I was so upset. How could I be so strong one day and so sick the next?
Turns out it was the first of my Sjogren's symptoms and what led me to a three year search for a diagnosis. Dry eyes, mouth, throat, ears, etc. soon followed, along with neurological symptoms, fevers, rashes, GERD, etc., etc. I ended up giving up riding and spending most of my time on the couch thereafter. Big mistake because I got even weaker...and depressed. I somehow got up the energy to start exercising and riding again this past January...baby steps of course. That and Plaquenil has helped me to actually be able to ride with my cycling club on good days. Racing again? Probably not, but you never know.
My Rheumy said it's all a part of Sjogren's, not Fibro, and that exercising, even if it's just walking or taking a yoga class, is very beneficial.
Hope you find some relief soon. It's the absolute worst feeling. :(
Hugs,
Maria
As Brooks1 said consider myositsis or poly myositsis. I've been diagnosed with myositis (exercisei induced inflamamtion/weakness) as I have times when I can't walk up three flights of stairs. I'm very healthy for having SjS and I'm only in my 50s, but it I try to work out for any length of time or climb stairs or a hill my thighs will get weak.
Last summer after volunteering at a outdoor event I met my husband for dinner. I was staying hydrated and had something to eat. Then we went to the parking garage and I could barely walk to the car because my thighs wouldn't engage. That happened a few times and scared the heck out of me.
I had nerve conduction testing which showed no issues. My neurologist continues to check on me periodically and keeps trying to decide if I have MS in addition to Sjs.
Daisy,
you do keep getting hit, don't you? I'm so sorry lady! You know I have this too, but I used to chalk it up to muscle weakness from steroid use. Docs did as well, that is until I saw my neuro. He says rhat this can be from the small fiber neuropathy I have. Sometimes you can actually feel much weaker than you actually are. Perhaps you can look into neuropathies? You test for these with a QSRT test or biopsy.
Another thing is that I notice that when my endo stuff is off (theyroiditis, or adrenal insufficiency) I get very, very weak. Have your adrenal function tested if none of this other stuff fits. Lots of women, particularly those who are chronically ill, can have low functioning adrenals. Doesn't have to be full on Addison's.
Hope this helps. Take care now.
Grace and peace to you Daisy.
~Andrea
Thanks for all the responses!
My muscle weakness happened when I had a very bad viral infection. Caused me intolerable pain, severe weakness, fever, etc. It went away within a few days but then hit again with the same intensity about 10 days later. (I learned what many of you have said that a trip to the ER is useless. I was labeled as "just" fibromyalgia and given the same ineffective pain killer I already took at home. Both times!)
Anyway I digress.
I researched a bit and have found transverse myelitis. Sjogrens can be a cause of the inflammation that attacks the spinal cord along with a virus that triggers our already overactive immune system. A good website is myelitis.org.
It seems really rare. But maybe this is something worth looking into. Maybe more of have this than we realize.