I've been struggling especially hard on and off for the past few months with crushing fatigue, among other things. I've had my thyroid tested, as well as regular blood work and testing for Rheumatoid Arthritis and Lupus. I am under a lot of stress, but I don't feel depressed. Overall I'm happy and I love my life, so I don't think it's that. I'm on ADD medication, methylphenidate, but even with that I'm SO TIRED all the time. I could literally sleep all day long if I didn't have the kids to take care of. It's so bad now it's painful.
Here's where the paranoia comes in. I've been having what I thought were some pretty vague and unrelated symptoms for a long time now. Twice since this summer, they've gotten bad enough that I went to the doctor about them. I've been constipated since childhood and barely anything works. I get these very deep, painful "itches" in my legs, especially my thighs. It feels like someone is injecting me with a syringe. The fatigue is almost unbearable. I can sleep all night and still need to take at least 1 nap during the day. Twice in the past 2 months I've had such a hard time waking up that I was paralyzed and couldn't move or speak even though I was awake. I felt drugged. I have migraines and near-constant headaches, and several times a week I'll go completely deaf in one ear, except for a very loud ringing sound. It's like someone stuffs it with cotton. I also get dizzy spells often. Sometimes I'll just be sitting in a chair and suddenly it feels like the ground shifts under me. I almost always feel a little dizzy. My legs are getting weak. When I was at the Christmas party, I was dancing and when I tried to "get low" (even a little) my legs shook when I tried to push back up again. At one point, a friend of mine had to grab my arm and help me back up. When I work out on the elliptical for even 30 minutes, I have to be careful when I step off or my legs will give out. My legs feel like rubber for a long time after working out, and stumble a lot. Sometimes I have trouble making it from the elliptical to the parking lot after a workout. If I sprint, even a few yards, my legs want to give out. It's like they can't support my weight anymore. For a long time I thought it was just because I was overweight.
I thought all of these had nothing to do with each other, but while researching the fatigue I came across the symptoms of Multiple Sclerosis, and boy it scared the crap out of me! I'm afraid to go to the doctor for a couple of reasons. First, I despise my doctor. She always makes me feel like an idiot. No matter what I tell her, she rolls her eyes and treats me like I'm a whining child. Second, I don't want to come across as a paranoid hypochondriac. I don't want to put myself through the issues with the doctor only to find out it's nothing.
In your non-medical opinion, am I just being paranoid? I know the muscle weakness after working out could be perfectly normal, I just don't see anyone else climb off the elliptical and fall to one knee because their legs gave out. :o I was totally humiliated the first time, so now I make sure I VERY carefully get off and then sit down for a while.
12-15-2010, 03:49 PM
Have they tested for MS? I'm NOT a medical person, but a friend of mine was recently diagnosed with MS and she had some similar symptoms: muscle weakness, exhaustion, and she either went blind or deaf temporarily (I can't remember which). I'm not saying that's what you have, but it couldn't hurt to find out.
12-15-2010, 04:00 PM
I'd also suggest getting the tests run. I went thorugh an entire year of test after test to finally determine that I have fibromyalgia and unspecified autoimmune disease (it's attacking my respiratory system).
My main symptom is fatigue. I have pain too, but even the worst pain wasn't as debilitating as the fatigue. To some degree, you can still function even if you're in terrible agony - but there's nothing you can do if you can't wake up. I'd actually trade more pain for more brain function if I could. When I first sought testing/treatment the fatigue was so bad I was sleeping up to 20 hours a day. I was falling asleep at work, and even on the drive to work, so before I had to quit, hubby was driving me to work, because I couldn't stay awake for the 5-10 minute drive to get there.
I do strongly suggest a couple of supplements, if your doctor is ok with them (and they shouldn't cover any symptoms if something seriously wrong is going on, but again ask your doctor first).
1000 mg Folic acid
1000mg fish oil 1 to 3 times daily (depending on dr's recommendations)
Vitamin D (I take D-3, ask doctor for dosage, or better yet get a vitamin D check first as if you're deficient you'll need mega doses to rebalance)
The supplements have helped every bit as much as my prescription meds.
12-15-2010, 04:02 PM
Went to see symptoms of ms on webmd and it says: ") The symptoms include: weakness, tremors, tingling, numbness, loss of balance, vision impairment, paralysis, and bladder or bowel problems." it doesn't say anything about going deaf, but some of the other symptoms fit. Again, I am not a medical professional, it just sounded similar to my friend's situation.
12-15-2010, 04:06 PM
Omg, somehow I did not read the paragraph you wrote that you'd already looked up ms symptoms. I feel like such a silly goose!
12-15-2010, 04:10 PM
The trouble with reading a list of the symptoms of MS is that it's such an all-encompassing illness that most of us can pick out a fair number of symptoms and say, "Oh, that looks like me!" (I know this is true because I just Googled it and could check off a good half dozen of those symptoms as well.)
My opinion is definitely a non-medical one, but I'm very familiar with being a little...overly health-conscious, you might say? About 300,000 people in the U.S. have multiple sclerosis; it's fair to say that a great many more have migraines, fatigue, dizzy spells, and weakness from other causes. If you're hearing hoofbeats, it's likelier to be a horse than a zebra. ;)
Your best bet might be to find a neurologist and present the full list of your symptoms to him/her. That way you can avoid Dr. Judgy (whom I certainly don't blame you for wanting to avoid!) and can go straight to someone who can potentially help you with the dizziness and muscle-weakness issues.
A lot of those symptoms also sound like physical or emotional stress, too. That's the diagnosis I got when I saw a doctor a few years back with fatigue, vicious headaches, and weakness. Turns out that my body was just having a delayed reaction to Katrina stuff that I'd shunted aside to get things done. Once those things were done, my body apparently decided it had the dubious luxury of feeling as though it was falling apart. A job change and a couple of months of mending made a huge difference.
A visit to a sympathetic doctor (not Dr. Judgy) will do more to put your mind at ease than anything, I think. :)
Pint Sized Terror
12-15-2010, 04:33 PM
Oh, I totally agree that a lot of the symptoms could be brought on by stress! Things have been exceptionally stressful for me lately, so it's not impossible.
I've had issues with being tired for years though. It's just gotten unbearable for the past few months.
12-15-2010, 04:45 PM
according to your stats youve been a member at 3FC since septemeber-- or the last few months? is that how long youve been trying to lose weight this go around? A lot of your symptoms sound like those expressed by women in a caloric deficit.. especially the xtreme fatigue, which has gotten worse the past few months..... if your not eating enough, you will be fatiqued with muscle weakness and dizzy and headaches, etc etc.... every person handles being in a deficit differently, and side effects can be quite sever for some......
just throwing out another thing to consider...
again, if you hear hoofbeats, think "horsey" not "zebra", ya know? ;)
oh, and why dont you get a new doctor? im sure she is not the only one covered by your insurance plan.. doesnt matter if youve been seeing her for a long time.... you obviously dont like her, or appreciate the way she treats you-- no big deal, see someone else
12-15-2010, 05:23 PM
The tiredness you dealt with for years could have still been because you were overweight, and the stuff now could be stress and fatigue from exercise. I've also had times where I woke up and was paralysed, like you've described. Stress can be a factor in that as well, as can sleep interruptions, and for the most part it's harmless. I've read it really only requires medication if it happens multiple times a month over the course of six months and other factors like stress and the interruptions during sleep have been dealt with, so it may just go away once you're not so stressed.
I'd really recommend finding a doctor you're more comfortable with, though. You shouldn't have to feel like you can't tell yours what's going on, as that is really the only way you'll ever know if these symptoms are stress related or if there's something else wrong.
Big :hug:! I hope you get things resolved and that you feel better :)
Pint Sized Terror
12-15-2010, 07:54 PM
I've been trying to lose weight for over a year. My daily calories are usually around 1400-1500, so I don't think that's it. I get roaring migraine headaches and the shakes if I don't eat regularly or enough.
I've always been hard to wake, even as a kid, so maybe that's just my "normal" that's just gotten a little worse since I'm stressed. My mom used to tell me about me sleeping through parades when I was 5 or 6, and even now I can fall asleep fairly easily no matter where I am or what I'm doing. I've fallen asleep at restaurants while waiting for my food to arrive. :o I struggle with insomnia very occasionally, like once or twice a year for a night or two. I sleep, just not until 2 or 3 in the morning when the insomnia's acting up.
I just don't remember being this tired even when I had a newborn and was getting less than 2 hours of sleep a night. :( For a couple of hours after I wake up I'm almost useless. I feel like a zombie.
I went to bed, exhausted, at 10:30 last night. I was falling asleep at 7pm, but stayed up to clean and get the kids in bed. I woke up at 7am this morning, took my son to school (exhausted and barely awake), and came home around 8:30am. By 9am my eyes were drooping and I was almost in physical pain, THAT'S how tired I felt. I talked my daughter into looking at books in my bed while I slept. She fell asleep too and we didn't wake up until 11:30am (she woke me up). Again, I felt like I hadn't slept at all. I mucked through the rest of the day until dinner. I was afraid to sit down because I felt like I could fall asleep at any minute. Husband came home at 6 and sure enough, I sat down on the couch and fell asleep until 7:30. I'm awake now, but I still feel like I need to sleep. My eyes hurt, my face has that sleep-tingle and my body feels half asleep. I feel like I'm under water and trying to move around, I guess that's the best way to describe it.
I know it's probably not anything serious, but there's no reason for me to be like this. Last month I went to my doctor almost in TEARS because of how tired I was. She ran the tests for Lupus and RA (I also have issues with my joints popping and aching, my right hand swells and gets stiff occasionally for no apparent reason) but all the tests came back fine. I don't know what to do. I can't just sleep my life away. I have a house and kids to take care of. I do take a multivitamin every day, but maybe it's not enough. Either way, I'm very frustrated.
12-15-2010, 08:13 PM
Have you been tested for mono?
12-15-2010, 09:52 PM
That kind of fatigue you're describing doesn't sound like the normal "fatigue" people with busy lives have (though it could have started that way).
It was years before I had a doctor take me seriously about the fatigue. I had to be very graphic in my descriptions before doctors realized I wasn't talking about normal fatigue (I knew what normal fatigue felt like, and sleeping 20 hours wasn't it).
I worked two jobs most of my career, literally burning the candle at both ends. The fatigue and pain issues came on gradually, and I dismissed them as "normal" or due ot my weight (and I was probalby right, in the beginning).
But fatigue can be like cooking lobster in slowly heated water. The temperature rises so gradually, you pass out before you get uncomfortable.
You don't realize the danger until you're falling asleep at a traffic signal, or discovering that you put fish sticks in the cabinet and the tv remote in the microwave (yep, I did all three - and worse).
I agree about the neurologist consult, mostly because I'm very prejudiced (my neurologist has been my absolutely best doctor ever).
Mine ordered a brain scan (to rule out MS, early-onset Alzheimers, and brain tumor) and a sleep study (sleep apnea was part of my problem, initially and I was spending virtually no time in deep restorative sleep).
If you do happen to have sleep apnea, and a cpap machine is prescribed, you will be amazed at how much better you feel after a few weeks on the machine. It didn't cure my issues, but the improvement was dramatic.
Not all people with apnea snore, so you can have it without anyone realizing.
You could also have a mild form of narcolepsy, or another sleep disorder (that's what my neurologist initially suspected, but the tests came back negative).
If there's nothing seriously wrong medically, you might be prescribed Provigil or another alertness drug. They're not stimulants in the normal sense, and are considered much safer, with less chance of dependence as long as they're taken as directed.
I haven't taken it in a couple years, but when I did it was gentler than high caffeine drinks. No jitters, I just felt alert and energic. It didn't work very well with the fibro, as it postponed my fatigue rather than eliminating it, but many people have great luck with it as a daily med (most of the people I know who are taking it have diagnoses of fibro, chronic fatigue and/ or sleep disorders like narcolepsy, or are OTR truckers.
You can't use it to replace sleep. That's very important, but I'm putting the cart before the horse, because you need a diagnosis before you can worry about meds.
12-16-2010, 02:36 PM
My Mother has MS and her first symptom was temporary, was blindness in one eye. She knew something was terribly wrong. I think sometimes you just know. I think its good that you are guessing and that you don't "know." Her MS affects one side of her body and particularly her right leg, making it hard for her to walk. MS has been relatively 'nice' to her in comparison to a lot of the others in her support group. She has had it for 28 years and can still walk with a walker. She is handicapped, but can do a lot for herself.
It is a usual occurrence for MS to 'show up' or 'disappear' with pregnancy. When she was 37 she had me (accident) and then the MS showed up a few months later. After the temporary blindness, she felt pins and needles in her leg 24 hours a day, then it went numb... she doesn't feel it anymore at all know, it sort of just drags behind her.
I'm not saying you don't have MS - but MS tends to show up quite severely (in the people I've known). Many find themselves in the emergency room.
12-16-2010, 04:34 PM
My mom has MS. that's the first thing I thought of when reading your symptoms. Get checked out either way - especially since you have military insurance and it's covered
12-16-2010, 07:50 PM
I'm not saying you don't have MS - but MS tends to show up quite severely (in the people I've known). Many find themselves in the emergency room.
My experience with MS has been the reverse. The five or so people I know with MS, had quite mild symptoms that they didnt think were serious for many years before they were diagnosed. Two of them complained for decades to their doctors, but the doctors always said the symptoms were normal, and there was nothing physically wrong. And one didn't seek treatment until the symptoms were severe, but most of them had odd symptoms for up to a decade before diagnosis.
For myself, my autoimmune disease was much the same. I was diagnosed about five years ago, when I started getting pneumonia every year, but I'd been having symptoms for probably fifteen years prior (initially very mild, and increasingly severe over the years). The year I was diagnosed, it had been my third consecutive year of winter pneumonia. When my doctor saw how much scar tissue had accumulated on the one lung, he began ordering the tests to check for autoimmune disease. It wasn't until the symptoms were severe that doctors started looking for autoimmune disease.
I'm told that's fairly typical. Autoimmune disease symptoms are often so vague, they don't get diagnosed for years, even decades. With better tests and more doctors having experience with AI, people are being diagnosed younger and younger (which is great, because it's easier to get AI disease into remission, the earlier it's caught).
12-16-2010, 08:03 PM
I'm so sorry your going through all this :hug:. I am not a medical person...but we do have to take charge of our medical needs or they will just fall through the cracks.
I agree with the other posters that you need to find a new doctor. One that will look you in the face and talk to you like a human being and with some respect.
I would take pad and pen with me that I had written down every symptom I had, medications I take mgs. and amount daily, test that have been performed with a negative- so that the new doctor will know that potential illness was ruled out, your diet and exercise plan and explain everything in detail to him or her about what is going on with you.
Sometimes when I go to the doctor I can't remember to tell or ask everything- so the pad goes with me.
Ask the doctor questions- could it be MS, my thyroid, carotid artery blockage, etc.? Ask if a complete blood workup be done.
I googled Potassium deficiency symptoms (I have this sometimes)
because some of the symptoms match- as do lots of other things. But if a blood workup is done it could be checked.
Please keep us posted how you are doing- I hope you feel better soon!
12-17-2010, 02:59 AM
Kaplods: I talked to my mom again and she did have a symptom before the blind eye - in the same eye, she would see super bright lights - which was a problem with the optic nerve and went undiagnosed.
And another event that led up to the blind eye happened when she was hiking in the woods with my father. She had a short bout of paralysis and her mind could no longer tell her one leg what to do. So, my father carried her back to the car and they went to the emergency room right away.
As my mother has always been involved with support groups for the disease - I've met so many people that had a symptom, were diagnosed, and then their lives turned upside down... But there are typically two kinds of MS - one is less regressive than the other. I also met two women that were in wheelchairs and then were literally cured from having a baby.
Other things that people with MS have trouble with: Extreme Heat. They literally cannot go outside on hot summer days, their bodies don't react properly/ the cooling mechanism doesn't work. That will literally zap ALL of their energy.
The most obvious symptom is the mind/body disconnect - insofar as the nerve system doesn't function (due to the damaged myelin sheaths around the nerves). So, they lose control of their body parts.
So, print sized tear, I don't think I'm helping. I am really inclined to find differences between your systems and MS symptoms - I don't know why. I guess I am hoping you don't have it.
I have only met 2 people that complain of the extreme fatigue and tiredness that you have: one was diagnosed with lupus, and the other with chronic fatigue (sort of).
12-17-2010, 03:00 PM
Odds are it isn't MS, it could be, but there are many, many more things things it could be. You can't know based on the symptoms. Even your doctor can't know by just the symptoms, and any doctor that claims (s)he can is full of crap.
Mine turned out to be fibromyalgia, but it could have been a dozen different things, including MS, Lyme disease, brain tumor, narcolepsy, early-onset Alzheimer's, clinical depression, thyroid disfunction, rheumatoid arthritis, lupus, myofascial pain syndrome or other muscle disease, bacterial or viral disease such as mono, autoimmune diseases (I did test positive for autoimmune disease, but not strongly enough to say it's the primary cause of my symptoms).
You don't have to have diagnostic tests for absolutely every possibility, but you and your doctor will be on a trial and error mission to discover what the problem is and how to treat it. He or she will start out with a tentative diagnosis, begin treatment and evaluate results. You've got to be an active participant and help the doctor evaluate the results. Is the treatment helping? Are symptoms improving or getting worse? Are there new symptoms?
If the treatment isn't helping, don't let a doctor brush you off. Ask for the next test (you probably won't know what the next text should be - this is why you need to have a doctor you feel you can trust). If that treatment isn't helping, push some more. Try to be very specific about your symptoms, even if it seems unrelated - mention it.
Use a symptom and food diary, so you've got specific facts to take to the doctor. You and he may find patterns that neither of you would have thought to look for. Wheat and sugar seem to be significant symptom triggers. If I eat a lot of sugar (even from natural sources like fruit), I feel like crap. I would have never guessed that (isn't sugar supposed to give you energy, I thought. My doctor said "it does, for a short burst, and then you crash).
Bottom line, you need a doctor you can trust, even when you disagree. A doctor you feel is paying attention and actually listening and taking into account what you say.