Leg fatigue/weakness, but no pain
I've got something odd going on, and I'm debating whether I should make an appointment with my MO. Sorry that this is so long, but it's such a weird problem.
I was feeling fine up until Monday afternoon on the 23rd. I was at work, and had done my usual amount of walking and climbed a ladder a few times. These are regular activities for me at work, and I didn't notice anything amiss. I sat down at my desk for an hour or so, and when I got back up again, my quads were tired, heavy, and tight. I wasn't in any pain, though. It reminded me of the time I had taken a diuretic that threw off my electrolytes. Walking was slow, and getting up the stairs was tiring, but I was able to make it around the building despite this.
I was really concerned something was throwing off my electrolytes, so I went to the hospital, where they found nothing wrong with my labs. Since I have osteopenia and take Prolia, they x-rayed my femurs in case I was on the verge of a fracture. They checked for DVT, heart attack, rhabdomyolysis, leg swelling, did some basic bedside neuro tests, and came up with nothing. They sent me home and told me to follow up with my PCP.
The next few days I felt better although my quads were still a little tired, and my knees ached around the kneecaps. I rested over the weekend, and by the time I saw my PCP a week later, I was back to normal, and we thought maybe I had a virus. By Labor Day weekend I was back to normal, and did yard work, washed and waxed my car, and other household stuff without a moment's trouble.
On Thursday the 10th the same thing hit me again at work - fine in the morning, heavy and tight quads in the afternoon. On the afternoon of the 11th, not only where my quads feeling heavy and tight, but my upper leg muscles and glutes ached so bad, I was really worried we'd missed something. So I went back to the ER, where I got many of the same tests again, and still nothing. The PA said this looked to her like something autoimmune, and she suggested polymyositis or polymyalgia rheumatica and told me to go back to my PCP.
Once again I felt better the next day, although not 100%. This past week my quads still got tired pretty easily, I had some muscle tenderness, and my knees ached around the kneecaps again. My right knee hurt so bad one day after work I had to mince my way to the car, but it was better after resting it a few hours.
I called my PCP on Monday, and he has referred me to a neurologist, but I'm looking at least October before I can get in. They haven't even given me an appointment yet. In all this time nobody has said a word about my breast cancer history, although they all are aware of it.
On Thursday I went into the MO's office for my Lupron shot and told the nurse about my symptoms in case my MO would want to know. She said she would pass them on to my MO, but the nurse is also new and I'd never even met her before, so who knows if she even remembered to deliver the message. MO's office never called me back, so either they didn't get the message or they aren't concerned.
The only tingling or numbness I have had is that I have been having trouble this past year with waking up in the night with my first or second toe on my right foot asleep. But it always resolves in a minute if I wiggle my toes or move my foot, so my PCP says it sounds like it is just positional. It only happens when I'm asleep, never when I'm awake. I've also had a lot of trouble with waking up with numb fingers on both hands which my PCP said was carpal tunnel. I've been able to address that by wearing wrist braces to bed. My PCP did some vitamin tests that showed my B-12 was borderline low, which he thought might be related to my new tendency to have my fingers and toes fall asleep at night.
Yesterday I saw a physical therapist. She and I talked about whether this might be cancer recurrence. After taking a history and examining me, she said that seems more inflammatory to her, especially when I described what was happening with my knees. I saw a rheumatologist 30 years ago for fibromyalgia, so the PT recommended I contact the rheumatogy clinic on Monday when they open and see if I can get an appointment there while I'm waiting to hear from the neurologist's office. I was actually feeling pretty good yesterday, but the PT did note that I have some weakness of the quads and hip flexors.
I'm debating whether I should call my MO though, and insist on getting an appointment to get examined and discuss whether this could be cancer recurrence. I'm particularly concerned about the leg weakness being spine related, but I think the PA's at the hospital and my doctor have not been going that direction because I have no back pain, no numbness or tingling during the episodes, and these episodes seem to improve with rest.
I'm very interested in what you ladies think - should I call my MO on Monday and insist on an appointment, or continue down the rheumatology/neurology track?
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How long ago was your covid vaccine? I'm wondering if you are having some mild reactions to it. Both the shots hit me hard and it took weeks to feel myself. After a month or so, it all felt like it was coming back...the sore arm, the rash (but much milder), the fatigue. That took a few more weeks and things seem to have resolved.
Are you on any new/different blood pressure medications? new vitamins or food?
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I had the Moderna vaccine in February and March. My side effects were mostly 12 hours of fever each time.
For medication, I had my second ever Prolia shot 10 days before this started, and my umpteenth Lupron shot 3 days before this started. The morning this started I took my first dose of a store-brand vitamin B12 supplement, and continued to take it all the first week that I was feeling bad. At the end of the week, I made the connection between starting the supplement that morning and feeling bad that afternoon, so I stopped taking the supplement and threw it out. When I seemed to have recovered by Labor Day weekend, I really thought it might have been a bad reaction to the supplement. I haven't introduced anything else new since then, and I can't think of any new foods I've had.
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Cubbie, it might be helpful to keep a diary of your symptoms along with your foods and supplements and anything else that might be contributing to the stuff going on with your legs.
I'm really sorry you're going through this. I think the wonderings and what-ifs can be siper stressful.
When you have your next appointment with your PCP or MO, or whoever you see, describe your symptoms in detail and what the precursors might be.
I hope someone on your medical team can figure it out for you.
Carol
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I am not a doctor but your symptoms don't sound like cancer to me.
It is good that you have been diligent in having your symptoms investigated and that nothing serious has been found.
When is your next scheduled visit to your MO's office? If it's not too far in the future, you might consider waiting until then to bring your concerns up again, or you could call to check if your previous message to your MO was relayed and whether the office thinks an appointment is warranted.
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I'm with Racy. Doesn't really sound like cancer. What about a neurologist? That's where i went with leg issues. Another option - my heart doc did a ULS/Echo test to monitor blood flow in my legs. Do let us know.
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Sunshine, I agree about the diary, and I was thinking about that myself. Especially since sometimes I feel 99% well, just a bit weak like after you've had the flu. For instance I felt really wiped out this afternoon, and now this evening after resting I felt much better, well enough to go for a short walk for a couple blocks and do my PT exercises.
Racy, I don't see my MO again until February, but I can check with her office and ask the nurse if the note was made. That seems like a good place to start.
MinusTwo, I'm supposed to see a neurologist at some point, pending the usual medical bureaucracy in getting referred. I did sort of wonder about circulation problems, too, but nobody has suggested that, I think because my pulses in my feet are fine and my calves don't hurt.
Thanks for all your input, ladies! It helps to have some experienced folks to help think this through.
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I have plain old osteoarthritis in my knees and this describes how they feel on bad days, like when the humidity is up.
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Cubbie I'm inclined to agree with the theory of autoimmune. the fact you also saw a rheumatologist for Fibromyalgia in the past adds to this theory. These days some more knowledgeable docs recognize fibromyalgia is actually Sjogren's disease. some of your symptoms (eps. fatigue, joint and neurological symptoms) fit this. You could have been having "flares." Flares do not necessarily show up in blood work with Sjogren's - even inflammatory markers can be normal. I'd ask for ANA blood work and antibody testing. They typically won't do the latter unless the former comes back positive. REALLY IMPORTANT.... If this comes back normal it does NOT mean you don't have Sjogren's. 30-40% of Sjogies have negative blood work (seronegative) - I'm one of them. Many docs will not recognize Sjogren's disease and be dismissive if blood work is negative... hold onto that fact! I was diagnosed by Shirmers eye test and Rose Bengal eye test. Others are diagnosed by lip or skin biopsy. there really is no one test for Sjogren's. Many docs just do NOT get this. It is also possible this is not Sjogren's for you - RA, scleroderma and lupus are cousins of Sjogren's. these are ALL serious systemic diseases. Sjogren's can/often overlaps with these. I have both scleroderma and Sjogren's.
Check out www.sjogrensadvocate.com developed and updated by a seronegative Sjogren's patient who is also an M.D. See if any of the symptoms you come across fit you and make a written note of these. I agree with the recommendation of keeping a diary of your symptoms as well. Sjogren's also has neurological manifestations too...... Keep us posted. Feel free to PM if you want... There is also a sjogren's community if you're interested.... www.smartpatients.com look for the Sjogren's community. You do not have to be diagnosed to be on the site - only wondering or suspicious you might have it. It's an extremely active community.... Best!
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Ive found the Xgeva bone strengthening shots can give me leg weakness/heaviness like you are describing (usually about three days after), and it could also be a function of the menopause/zoladex (if you are still taking that). Second the keeping of a diary and see when this happens and how it may correlate to some of these injections.
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Alice, that's interesting that knee arthritis gives you similar problems. I thought maybe my weak muscles were putting strain on my knees, but the PT seemed a bit skeptical about that.
LivinLife, I've never been sure about that fibromyalgia diagnosis. I got that diagnosis back in '93, and my problem then was aching upper leg muscles, like now, only at that time I had no weakness. It started immediately after I had had a very bad case of influenza. Back then they sent me to PT and with stretching, light exercise, and scheduled rest periods during the day, I was much better about six months later. I always thought it might just have been some kind of post-viral syndrome. My PT and I were discussing if what I really had back in '93 was something else that is flaring up again now.
Sondra, I have Zoladex on my signature because Lupron isn't an option to choose from, but they are in the same class. I have been continuing to take Lupron all this time. I didn't have any trouble with my first Prolia shot, so I wasn't really suspicious of the Prolia, although I have considered it.
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Cubbie my Sjogren's is related to Epstein Barr virus - often Sjogren's comes about after some kind of virus. they're finding these kinds of things with long-haul COVID as well..... they are developing more autoimmune and autoimmune-related chronic symptoms such as POTS and other small fiber neuropathies.... I'd be really surprised if you don't have Sjogren's. My rheum made a note of Epstein Barr in my chart - I had a very severe level of it in my 30's at the end of my Master's program..... I wasn't diagnosed with Sjogren's until in my 50's which is not unusual unfortunately. I hope you'll check out Dr. Sarah's website....
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Cubbie, I don't know where you live, but you might consider getting a test for Lyme disease. Many people never get the telltale bullseye rash, and symptoms can be odd and unpredictable. Hope you get some answers soon.
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Sailing, Lyme disease is definitely on my list of questions to ask. I'm in the midwest, and I live on a one acre semi-rural property with a creek and do a lot of yard work. Ticks are a definite possibility.
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I wasn't able to get an appointment with my rheumatologist because I haven't been an active patient in so long. I'd have to get a new referral from my PCP.
I did go ahead and ask for an appointment with the NP at my MO to discuss whether this problem is cancer related. I saw her yesterday. She did not think it is cancer related based on her exam, the symptoms I'm having, and the fact that this randomly gets better for periods of time. She wants to see what the neurologist's office says. I have an appointment with the NP at the neurology clinic in two weeks.
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Keep us posted Cubbie.... Been thinking about you.....
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I saw the neurology nurse practitioner today. My physical exam was normal, other than I have brisk knee reflexes, but I've always had those. She mentioned a lot of possibilities, but nothing fits perfectly. She said she keeps thinking about my back, but when I brought up the possibility of cancer recurrence, she said she didn't think it was that, but some other back issue.
She's ordered a bunch of labwork to check everything from Lyme disease to vitamin deficiencies to autoimmune diseases. I'm also getting a lumbar MRI and an EMG. I should find out in the next couple of days when these tests will be scheduled for.
LivinLife, she mentioned Sjogrens as a possibility she wanted to check, without me even suggesting it. She seems very knowledgeable.
I'm glad I did some reading and talked to you ladies first, it helped me understand what we're testing for without having to try to remember everything and Google it later!
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I've finally got all my tests scheduled. The EMG will be November 9th, and the MRI of the lumbar spine is this coming Monday. We will see what that shows. Despite everyone thinking this isn't cancer, I'm still concerned.
I went to the medical center today and got my blood drawn for the labwork. They took 11 tubes. I don't think I've ever had that many drawn at once.
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Cubbie - so glad your scans are scheduled and the blood drawn. It's really hard to wait, but at least it's a start.
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Cubbie, that's a LOT of tubes! I routinely have 3-4 tubes drawn for 4 tests: CBC, CMP, CEA and CA 27.29. 11??? Sheesh, I hope they only had to poke you once. The guy that stuck me today was AWESOME. I hardly felt it. I'm blessed to have good veins.
Hoping your tests go well,
Carol
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They did only have to do one poke, then switch out tubes. The lady who did mine was as good as your guy, it didn't hurt at all. Never had a blood draw go so smoothly.
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I have to have blood drawn from my ankle because of lymphadema. So once every 6 months, I ask all the docs to pile on all the tests they might ever consider waiting since I won't allow any more for 6 months.. Usually the take 7-8 vials of blood - but yes, from one stick.
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The blood tests I had done this week all came back normal. I had the MRI of my back done today instead of Monday, and they told me it was normal as well - nothing pressing on a nerve, no tumors. So we still don't know what is causing my problems, but we've ruled out a few things.
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Cubbie - frustrating, but you're right - some things ruled out. Good luck going forward.
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Cubbie -
One more long shot thought. I have also been having seemingly random weakness and quad tightness and pain in one leg, and knee pain. Kept stretching and strengthening with only minimal relief. X-rays were all fine. Finally, after four weeks of trying to correct it, my PT suggested I might have lymphedema with limited lymph flow in the groin area (had past surgeries, including a C-section and mild truncal lymhedema on that side) Lo and behold, saw a lymphedema therapist, she did massage, opened things up, and I am much better.
Just throwing it out there! And hope you get answers soon...
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That's an interesting idea. I've actually wondered if I have some mild swelling in my legs, because I've also been having carpal tunnel problems this summer, and carpal tunnel can be related to fluid retention. I've been wondering if I went low sodium with my diet if that would help. It sure couldn't hurt.
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It sounds like electrolyte imbalance or something of that sort, though lymphedema would make sense too. My MO always has said that cancer symptoms come and stay and eventually worsen; they do not come and go.
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