Muscle Pain and Body Aches

What's wrong with me? Over the last two years I'm so tired I can't get out of bed in the mornings and all day and all night I have severe exhaustion no matter how much I sleep. I also feel depressed all the time and I have horrible muscle pain and body aches. I can be perfectly fine one day and the next day I wake up and my whole body aches for weeks. It's so bad I feel like I've been run over by an 18 wheeler truck. It's so bad that I can barely move and I'm miserable. Then it will suddenly go away just as quickly and mysteriously as it came on. I also can't do anything physical now without getting severe muscle pain. Just a walk around the supermarket, doing house hold chores, anything at all and I'm suddenly so sore and stiff I can barely move and this lasts for weeks. I feel like I've been punched hard all over my body and I'm miserable. I never used to have any problems like this before. What's going on?

Note: I do have lots of health issues that I've had for decades but never had any of the muscle pain or body aches until just two years ago and it's getting worse. I have Hashimoto's Thyroiditis which is an autoimmune disease of the thyroid that causes hypothyroidism. I have type 2 diabetes. I have high blood pressure and high cholesterol. I am on medications for my Hashimoto's, diabetes, blood pressure and cholesterol. My numbers are all good and everything is within a healthy range and the doctor seems satisfied with my numbers and blood tests. Could any of these health issues be causing my very severe body aches and muscle pains, depression and exhaustion or is something else going on?

[waterfalls7]

there are cases of fibro mialge a sress disorder can come on from stress as a child and somthing stressful hurts, theres also cases of ms were people go day to day in pain. theres also cases of sists that come on wich could be if ur a women

[rnangel]

Do you become short of breath with minimal exertion? Have you had your iron levels checked?

[inconfusionalways]

Sorry to here about how you feel, but did you know one autoimmune disease can turn into another, sounds like lupus, maybe? It's hard to diagnose because hoshimotos thyroiditis has alot of the same symptoms, but lupus gives you body pain and it's symptoms flare from time to time. and it really fatigues you. fybromialgia is a pain in your neck and shoulders and it feels like stress with an annoying headache and it runs to your chest sometimes, and it also has flare ups at times. I would read up on lupus and multiple sclerosis but they all have same symptoms and thier is always a difference somewhere

[Lusman]

chronic fatigue syndrome and fibromyalgia could account for your muscle pain and body aches. However, do you find, hard to concentration; sore throat; tender lymph nodes ,headaches, unrefreshing sleep?

[MrsRG]

I don't have a sore throat or tender lymph nodes, but I do have massive headaches and very unrefreshed sleep.

[MrsRG]

My muscle pain and body aches are in every part of my body, not just my neck, shoulders and chest. The worst pain seems to be concentrated on my lower back near my tail bone and in my knees and thighs and in my upper arms and in both the tops and bottoms of my feet. The aches are so severe it keeps me awake at night.

[MrsRG]

Yes, I get winded with the smalled of physical effort. Yes, I had my iron checked and it was fine. I had a full physical a month ago and everything was fine except my triglycerides which were 600 and it should be under 150. So I go back to the doctor on the 18th of January to recheck my triglycerides and if after eating super healthy and exercising for a month hasn't lowered them, my doctor will put me on medication to lower my triglycerides. But that doesn't explain why I have such horrible muscles pain and body aches and extreme exhaustion and chronic fatigue and depression.

[inconfusionalways]

The depression might be because you are in pain and you don't know what to do any more. exuastion and fatigue are the symptoms of the thyroid disfunction, but their are a number of disorders out their that could make it worse. I had your symptoms extreme fatigue, pain in my neck, shoulders, my feet, my hips, legs, all my skeleton, I have to roll out of bed sometimes and when I sit down I have to wait a few minutes for the pain to go away from my feet, hips and legs, I was so bad I couldn't roll or lift my head when I was laying down. I head to use my hands to position my head. I went to see a rheumatologist and I just found out I have Osteoarthritis which explains my excruciating pain when it flares up. Osteoarthritis fatigues you also the pain is horrible from top to bottom you feel stressed as well as depressed because you feel it will never end. But their is hope, I take diclofanac for the pain, but now I have to go back to the specialist to see how far it's advanced. Take care feel better soon

[Laurief59]

I do know what you are feeling Mrs RG.  I was diagnosed with metabolic syndrome-cholesterol, high blood pressure and diabetes follows.  It is said that people with a seditary life style are pron to this.  I lived a very healthy, and active lifestyle until these things took over my life.  I then was diagnosed with osteo arthritis in both knees.  I kept telling my doctor I was feeling inflammation.  she kept saying no your not, no your not.  7 yrs later was diagnosed with inflammatory arthritis. Over the last 2 yrs was also diagnosed with rhuematoid arthritis.  I keep telling my doc the same thing.  I cant sleep at night as legs cramp up.  Movement is very , very painful.  I have gained a great deal of weight to lack of mobility, which obviously isn't helping my osteo.  I was on oxy contin and it didn't help.  Now I take nothing for pain, and can do nothing.  If you find out what it is plz, let me know too. I will do the same.  I checked out the auto immune diseases and they are very similar.  a different symtom here or there.   I showed every symptom of MS, but they diagnosed me with rheumatiod-symtoms pretty similar.  I am on celebrax, but it doesn't help.  I also came up with a new symtom the last 2 yrs.  My body cramps up and is very painful with slight cool air and breezes-eg , fan, cool air, wind,air conditioning.  I cannot tolerate them anymore.  and to top it off from the chest up I am pouring in sweat due to menpause.  I have found nothing that helps me yet.

[S_Griff]

Hi lusman youve described most of my symtoms (symptoms) ??? What am I suffering from throat doent hurt to swallow but it hurts all around?? Please I'm so depressed!!!!!

[MrsRG]

Greetings Laurie:

I'm sorry to hear about your condition. It sounds very much like what my mother in-law is suffering from. She was diagnosed with a type of arthritis called Ankylosis Spondylitis. It is an auto-immune disease that causes severe pain. I suggest you have a look at this web site for more information:  

http://www.spondylitis.org/about/as.aspx

If you feel that the definition of Ankylosis Spondylitis sounds like what you are experiencing, I suggest you find a doctor that can test you for it. There are very specific tests for it. It is rather rare and many doctors haven't even heard of the disease.

Good luck and I hope you find the answers and cure you need.

p.s. I still have not found out what is causing my problems even after having all kinds of tests done.

[S_Griff]

Thank you so much I'm so sick of going to dr they all think I'm nuts in the head!!lol well I'll keep on going if pain and discomfort don't go away! I hope you have success in getting healthy best wishes and god bless!! It's so frustrating when you know somthing is wrong and dr tells you nothing!??

[MrsRG]

Yes, it's frustrating. For 10 years I was having problems and doctors thought I was nuts. I finally found a doctor who diagnosed my Hashimotos. But those 10 years of being untreated destroyed my health. Now with my depression and all over body pain I'm having the same trouble. Moved 400 miles away and this doctor seems to think there isn't a problem. He did however, give me a cortisone shot in my back for the back pain and prescribed an anti-depressant. The cortisone shot marginally helped. I'm doing back exercises a previous doctor gave me a few years ago and I think they are helping better than the shot. However, my overall pain is another issue that my current doctor is sort of blowing it off as depression. I looked at the side effects of the anti-depressant and I refuse to take it. Instead I've been doing research on holistic approaches to treating depression and I think I've come up with a good treatment on my own. I went back to the doctor and he was surprised! He thinks my mood has improved and he wants me to keep up what I'm doing for the next 3 months and then I need to go back in to be re-evaluated. My new routine is helping with exhaustion and I feel so much happier and more perky! But still have pain issues. My diabetes and blood pressure and cholesterol are still high despite medication, diet and exercise. I am very concerned because my triglycerides are very high and my blood sugar is rather high and my blood pressure is a little high. But the doctor thinks all that will be better in three months. Hmmm.

What I'm doing for depression:

I bought a SAD lightbox. I live in an area that gets very little sunlight. It rains and snows a lot and lots of fog. Only the summer months is there enough sunlight and then it gets well past 100 degrees and it's difficult to be outside. My vitamin D level is deficent so I'm on vitamin D and the SAD lightbox also helps with this. I really notice the difference using my SAD lightbox.

I also am taking OTC supplements for depression: 5-HTP; L-Tyrosine; DL-Phenylalanine; Mucuna Pruiens, L-DOPA and SAMe.

The 5-HTP is really helping my sleep and mood considerably! When I wake up in the morning now I feel refreshed and not tired and achy all over like I used to when I woke up.

I recommend anyone reading this post to do some Internet research on OTC herbs and supplements but please make sure they don't interact with your prescription medications or with other herbs and OTC supplements. Some herbs and OTC supplements make some health conditions worse. Always talk to your doctor and pharmacist before starting any herbs and OTC supplements.

[johnb16]

A related discussion, All my muscles ache. was started.

[bonijokrauss]

It is very possible that you could have fibromyalgia. It often develops in people that have chronic illnesses such as thyroid disease. In fact, thyroid disease is one of the biggest underlying factors. There are different levels of this disease and its symptoms can very, from severe to mild. I know people that have it, that have had to have their kitchen remodeled to accommodate their inabilities. And others, like myself, that still manage to go to work. Like many diseases and conditions, my symptoms can increase during certain times of year, and cold weather is always worse. Please consider this, and research it, and see a neurologist. There are ways of coping with it. Good luck! Hope things get better for you.

[MrsRG]

Thank you for your comment. I'm on a county funded medical insurance program for the poor through Medi-Cal that is called CMSP and I'm limited to who they tell me I can see. So I can't just go see a neurologist without a referal from my primary doctor. He won't refer me. Instead he referred me to a Rheumatologist. On my blood work it showed I have more than just Hashimoto's going on. My ANA was way out of range. But when the Rheumatologist got my test results and medical records forward to him from my primary doctor, he took a look at them and told my primary doctor there was nothing he could do for me. My primary doctor says I have Lupus like symptoms but I don't have Lupus...huh??? My doctor did find out I have a vitamin D and Potassium deficency and he has prescribed medications for those. Right away a lot of the leg cramps have gone away with the Potassium pills I'm taking. But I still have severe pain aside from that. So my primary doctor prescribed Celebrex. The Celebrex does seem to be helping but it doesn't eliminate the extreme shooting pains I get. But it helps with the all over body aches and with it I'm much more flexible than I used to be. However, I still can't stand or walk for very long. I can't walk through a mall or through Costco. That's just too much standing and walking for me and I'm in horrible pain when I try. But, my primary doctor doesn't seem to be addressing this issue. I can change doctors but they are all in the same medical group (I live in a small rural mountain town and there aren't that many choices for doctors) and when I did see another doctor she sided with the primary doctor I have been seeing and didn't want to overstep his authority so she was not willing to address my pain issues. Being on CMSP (which is not Medicare) makes my choices very limited.

[Snowflake2363]

Aspartame -do u use it? I was like that for two years then was diagnosed with aspartame allergy. Within a few days no more pain! And bonus switching to sugar I dropped 57 lbs in two months with no other changes to my diet! It was life changing!

[Snowflake2363]

Aspartame causes a variety of symptoms mimici g other diseases. Headaches are a key sign. It's also the worst for diabetics as it causes false readings!research aspartame toxicity on the net. It takes 2 months of zero ingestion to detox your body from it.

[MrsRG]

Thank you for your post Snowflake2363. I just got back more lab results and I have very low cortisol. The doctor is going to be running more tests but he thinks I have Addison's Disease.

[DebMlpn]

Have you ever researched juicing? I am having the same symptoms you are having and I have in the past did a detox on juicing and green smoothies for a rash I had on my face for 13 yrs after the birth of my daughter. Got tired of them pushing on the same pill which yes took it away but to no avail it would return. As a nurse I do know that rashes are from something within your body acting out,so I was determined to take one month and detox and did a 15 min simple yoga workout every morning when I got up. I figured what do I have to lose. Will let me say that I started holloween and by Dec 11 I had one drying  spot on my face  left,felt so rejuvenated,felt light and that would be do to the fact that I lost 26 lbs,went from a 12/14 to a size 8.My husband let me buy new wardrobe from chico's my favorite clothing store and I have never in 45 yrs felt so much  enjoyment trying on clothes! Sad to say I had to come back from a warm sunny yearround place to a north with to long winters. We also have boat and we went out alot and I drank to many fruity cocktails and slowly let the lbs I lost come back. So I am feeling the same aches and depression as you and I know what I need to do it is like anyother thing I need to get back to having juicng in my eating on a regular bases and stay away from sugars,flours and to much dairy.If you are looking for a eye opening book to read that is very simple to read get "Juice Yourself Slim" by Jason Vale . Hope I didn't talk your ear off to much but let me know if any of this helps. A pill to me most times is just a  bandaid,and sadly our world has come to make the drug companies richer and we just keep getting sicker. Good Luck <3

[DebMlpn]

Forgot to mention that it might be helpful to find a Dr. who is educated in alternatives due to your multi health issues,you can find one who will work with you closely. I am going to start journaling myself to keep myself on track. Get better soon<3

[MrsRG]

I have type 2 diabetes and juice raises my blood sugar too much. Besides, I have far too many things going on that just juice won't cure. But thanks for your post.

[mion29]

I'm a relatively healthy 29 year old who has been having the same symptoms. I've discovered that if I reduces my intake of wheat the symptoms disappear. I feel less tired, depressed and the muscle pain has gone! It's still in the early stages of not eating any food that has wheat in it but I'll keep you updated.

[MrsRG]

I did cut out wheat. Found out it's not that. It's autoimmune. Being tested for Osteoarthritis, Multiple Sclerosis, Parkinson's, Addison's, Adrenal Gland Fatigue, etc. My ANA shows it's autoimmune. Cortisol level is way too LOW. Not high...low. Also have Potassium deficiency and vitamin D deficiency.

[pumpkinmarie]

My mom and i both have fibromyalgia....and i can say without a doubt the fibro pain is not just in your neck and shoulders. We both have the worst all over muscle..joint..nerve pain and we have both been to a Rheumatologist. My doctor even diagnosed me with Polymyalgia which is only in your neck and shoulders... ive been on lyrica...cymbalta..every kind of pain med thete is and nothing helps...they just turn me into a zoombie..W cant sleep well..always exhausted...in pain..shakey (shaky)...and my SED rate (imflamation in the body)... Should be below 14 but is always in the 50's up to the 70's. My doc puts me on 2 week therapy of prednisone which helps a little but since im also going through menopause the prednisone screws up my hormones so bad i end up having several very painful periods two weeks apart. Prednisone is a bad drug...it can severly mess you up So now both mom and i just suffer horribly with pain. I also want to tell you that for 10 yrs or more we both have figured out that the barametric pressure causes our pain to be worse when the pressure goes up or down....like it hurts people with arthritis... There does not have to be a storm coming in for the barametric pressure to move up or down. If you can watch The weather channel on tv...or online...look it up and when your pain is at its worst i bet you the pressure is moving....I hope this helps someone to understand alittle more about thier all over pain. You will all be in my prayers.. Remember you ate not alone in this horrible pain.  Dawn.

[pumpkinmarie]

My mom is diabetic... did you know insulin pushes potassium out of your blood? My mom has to take up to 4 potassium pills a day or she gets the most horrible leg cramps at night...it gets so bad she screams...she is also low on vit D...she does not get out in the sun much... We both take alot of supplements...i dont think we could function at all without them.

[MrsRG]

I hear you pumpkinmarie! I take lots of supplements too. Even though I eat healthy, for some reason I have lots of vitamin and mineral deficencies and no one seems to know why my body isn't absorbing and using what I eat. It's certainly not going right through me, as I'm seriously overweight. But I hear you on the leg cramps thing. My doctor said my blood pressure medication is causing the potassium deficency. I don't go outside much because I live on top of a very steep hill and there is no way down but by car and I don't have a car. There's no place to walk here. I live deep in the rural mountains deep inside a forest surrounded by huge pine trees and redwood trees. It is in an area that doesn't get much sunlight and is cold and snowy or rainy a lot. So I'm deficient in vitamin D as well. I also have very painful bone spurs and a bad back and trying to walk causes me severe pain were I'm so bad I'm about to pass out after walking more than five minutes. But the all over muscle pain and body aches and joint aches and cramps in other parts of my body, the doctor still has no idea what is causing it. I can type for a while but then it hurts. The worst for my hands is trying to hold a pen or pencil or a fork or spoon or a cup or glass. It's just down right painful. So I'm having a horrible time using my hands and no one knows why. I get shooting burning pains numbness and tingling in my hands that go up to my elbows when I try to use my hands. But that's only part of it. Like I said, my whole body is in extreme pain all the time to the point I sometimes which I'd just die because I don't want to live like this any more. The pain medication isn't working and the doctor pretty much has given up on me and I'm stuck with this doctor because I'm on Medi-Cal's CMSP and I have to see this doctor. There is no other CMSP doctor to see in my area for hundreds of miles and since I don't have a car, that's an issue. I have to try and get rides from people and that's proving to be more and more difficult for me.

[thekindredheart]

I know you said you tried wheat.  Did you try gluten? Gluten is different than wheat because it is also in barley and rye. Celiac disease is an autoimmune disorder where gluten causes the body to react.  It can cause deficiencies, usually goes hand and hand with other autoimmune disorders and can cause head to toe symptoms that are hard to diagnose.  There have been over 200 symptoms reported by those with celiac.

Gluten is hidden in many foods so when you were removing wheat, you could have still had gluten.  One crumb can cause your body to react.  

I had many "mystery" symptoms for years until I discovered my celiac. I now work with clients and help them through getting gluten out and it is amazing how many autoimmune they all have.  Gluten is a trigger for those autoimmune and when gluten is removed, there other symptoms also are relieved.  

I hope this helps, you may have already tried this but felt it was important to share.  Best to you!

[MrsRG]

Yes, I tried cutting out Gluten. My doctor even did a blood test for Celiac disease and no, I don't have an problems with Gluten. But thanks for the post.

[cinders51]

Have you been tested for Lyme disease I friend has it and it created all the same symptoms as you describe, it just seems to be very hard to diagnose though.

[MrsRG]

No, I have not been tested for Lyme disease. Thanks for mentioning that. I should because I live in a heavily populated area for ticks.

[chansonie]

Hi , did you check the vitamin D level in your body? Since lack of vitamin D can cause most of these symptoms! Check it and keep me updated !  Hopefully you'll get better soon!

[MrsRG]

Yes Chansonie, my vitamin D level is very very low, so is my potassium level. Doctor has me on prescription D and potassium. I've been on them for about 2 years now. But even after being on them for 2 years and being tested that levels are normal when on them (the minute I go off of them my levels drop again), I still am having horrible all over body pain and aches. Doctor says I have some kind of auto-immune Lupus-arthritis chronic pain syndrome chronic fatigue syndrome Hashimoto's Thyroiditis thing. So I don't know. I just know that the pain medications the doctor gives me doesn't help. Mobility is bad. I can barely move. It's like I'm in slow motion moving through thick tar. It hurts to stand, walk, sit, lay down. Basically I just hurt all over all the time. And I don't sleep well because of this. Even with sleeping pills I wake up after about 3 or 4 hours and can't go back to sleep. I'm absolutely exhausted all the time and have no energy. It's an effort just to get out of bed in the mornings.

[luckayday]

yes thats me for the past 2 months

[Lou025]

For quite a few months now I have been experiencing a very aching body. Mainly in my knees lower legs and lower back. Every time I sit in a position for a few minutes or lay down the pain starts an I have to alter positions and then re alter a few minutes later. What could this be.? I am a young healthy 25 year old with no other medical conditions

[Me967]

You sound identical to me (only it's been 13 years now) with this pain and as of 2 yrs ago.....No pain meds!    I can't even keep up on my house anymore because my body feels like it is going to shatter into a million pieces.  Sigh  Cold weather or fluctuations in the temps seem to set it off worse.  Then sometimes in the summer months it just vanishes.  I've been in pain non stop now since fall.......it's now spring and I can barely stand the pain.  It's not only constant pains; but, also muscle spasms threw out my body.

I take thyroid meds, heart/BP meds, and cholesterol meds.  I was told to take CoQ10 to help with the side effects of the Lipitor.  I also have type ll diabetes.  I take vit D because my levels are always borderline low and if I stop taking it, my levels drop.

I sent you a friend invite.  I've had a ton of test done.  Still no answers.  If you get any help please let me know.  I will do the same for you.  
((((Gentle Hugs))))

[onetreehill]

Hello Lou, sounds like might be a lower spinal problem.   A protruding disc or pinched nerve in the lower spine can cause leg pains.  Probably need a back exam.

[MrsRG]

Accepted your friends offer. Feel free to email me at: ***@****

Wow, we have a lot in common! I take BP meds, cholesterol med, thyroid med, lots of allergy/hayfever meds, asthma meds, stuff for GERD, pain meds, diabetes meds, etc. etc. etc. My husband jokes saying I take so many pills I rattle when I walk, ha ha ha.

I used to be slim and healthy until I hit about 35 years old and my thyroid went wacko with an auto-immune disease called Hashimoto Thyroiditis. I wonder what caused my body to kill my thyroid. As far as I know, I was not exposed to any chemicals and I never smoked or drank alcohol. I was always into healthy living, eating lots of organic fresh whole foods and exercising a LOT. I would exercise 3 hours a day doing walks and aerobics and weight lifting. I was a size 0 and had a body fat percentage of only 11 and good muscle tone. Then ... WHAM! My thyroid went wacko and I gained a ton of weight in a matter of months and developed all kinds of health problems. But, this pain thing...that's new. Three years ago I started in with all the pain and I've been to several doctors and had all kinds of tests and they have no idea what's going on with me. But I can no longer even walk through a supermarket without being in severe pain. And the pain meds aren't doing anything to help. I miss being active and I'm sick and tired of being sick and tired. I just want my pre-35 year old health back again. I'm too young to feel like I'm 120 years old! Heck, I'm only 50 years old! I'm still a spring chicken and certainly too young to being going through all this. Anywho...thanks for the friendship offer and I will send out good vibes your way hoping things get better for you. Keep in touch. Huggles :))

[Narisha1017]

How are your B-12 levels?

[gougeon]

I would ask for a referral to a rheumatologist to be checked out for fibromyalgia. If this is checked out and found not to be an issue you might also want to have your body's trace mineral content checked. Trying a trace mineral suppliment(available at health food stores) wouldn't hurt, and just might help. Lack of these minerals can affect sleep, cause lowered energy and body aches. After being this debilitated, depression would not be unusual. Good luck in your search for improved health.

[MrsRG]

Yes, I just had a full blood work up. My B12 was way too high! It was like 10 times above normal. Not sure why. So I'm definitely not low on B12.

[MrsRG]

My doctor sent a referral to a rheumatologist, forwarding my medical chart to him. After looking over my medical chart, the rheumatologist said he couldn't help me and said he wouldn't see me. My doctor then sent two more referrals to the same rheumatologist and again he refused to see me saying he couldn't help me. There's only one rheumatologist in our county that works with our Medicaid. We live in a rural mountain community with a population of less than 1,000 people. The way our Medicaid is set up, we aren't allowed to go for medical services outside the county. So there's no rheumatologist that I can go to. Yes, I'm on trace minerals. I buy them through iherb online. I do have low potassium and low vitamin D. But I'm being treated for those by my doctor with medication. I also try to eat foods rich in potassium and vitamin D.

[northerngirl66232]

I have had the exact same symptoms as you. If you had any antibodies on your celiac test it may indicate gluten sensitivity. ie non celiac gluten sensitivity. Basically gluten and other food intolerances lead to leaky gut and to adrenal fatigue hence the low cortisol. To better understand this read these two books. Adrenal fatigue, 21st century illness by Dr. wilson and the Gluten effect by dr. vikki peterson. The depression, body pain, and fatigue are most likely due to leaky gut and the tremendous stress on your body is leading to exhausted adrenals. Try and remove foods out of your diet for a two week period and note any changes. I know my pain is worse after eating gluten or dairy. My celiac test came back neg also but I did indeed have antibodies. I noticed that if I do not eat, the body pain and depression is drastically reduced so it has to be inflammation in the gut causing the problems. From what I read you have to treat the adrenals and the food intolerances at the same time to get positive results.

[MrsRG]

I don't have any issues with gluten or dairy. I was was tested and I'm fine with those.Turns out I do have adrenal problems. Doctor things I might have Addison's disease. But he doesn't seem to be doing anything about it because I've got more pressing issues with my diabetes, depression, thyorid and chronic pain and problems with my hands and mobility issues. He's not a specialist, just a simple country doctor and doesn't really know much about Addison's disease. I live in a small rural mountain community with only about 200 people in the whole town. It's hundreds of miles away from anything and I'm on that county's Medicaid. I can only see doctors in that county who accept Medicaid and he's pretty much it. There are no specialists in the area for hundreds of miles and my county issued Medicaid says I can only see doctors within the county. So I just make due.

[medavet]

It would take a book's length of words to describe what I've been through but, let me just ask this; do any of you, on an ordinary day, feel pretty normal then, when you do any physical tasks, this is what starts the severe muscle and body pain? I've been to many doctors and have been diagnosed with Myotonic Congenita. Now, they diagnosed me with an EMG. Doctors only learn about this muscle disease from people like me, there is no research. Get this; When I first started looking for answers, I gave all my symptoms and for a disease they know little about, they said, " Oh, that and this are not part of it". The that and this were the attacks of stiffness and pain up to 30 times a day with a noticable progression of the disease. They tried me on quite a few drugs. Some made me sick, some, suicidal and without putting a slight dent into the pain or symptoms. I told the doctors that I can not be a test rat for new drugs so, I went and studied everything I could about muscle diseases then, returned to my doctor to see if he had learned anything new. I told him everything I did before only this time, he said my pain and progression were part of it. I asked for more genetic testing and had to go before a medical judge to state my case. My insurance company lawyer had a doctor 2,000 miles from me, convince the medical judge that all I had was spasms. The judge heard my side but sided with the nut I never saw so, I lost the case. I'm not convinced that I have what they claim I have. I have stayed away from any physical work that puts a strain on my muscles now for 8 months and have been pretty good. The past few days, I decided to try so light duty yard work, just to be out and flexing. I am now loaded with pain killers, 800mg of Ibuprofen, heating pads and ice and feeling like screaming from the pain. My wife says I look like the color of cement and seriously, I beg for Jesus to take me.I don't know where the answers are but man, I've looked. I feel sorry for any of you who know this pain and I will pray that some answers come for all of us. Thanks for the ear

[MrsRG]

I'm so sorry to hear about your Myotonic Congenita. I just read about it on Wikipedia. Only about 1 in 100,000 people have it. This is what Wikipedia says about treatment:  Some cases of myotonia congenita do not require treatment, or it is determined that the risks of the medication outweigh the benefits. If necessary, however, symptoms of the disorder may be relieved with quinine, phenytoin, carbamazepine, mexiletine and other anticonvulsant drugs. Physical therapy and other rehabilitative measures may also be used to help muscle function. Genetic counseling is available.

And here's what Wikipedia says about Myotonic Congenita:

Congenital myotonia (also myotonia congenita) is a genetic, neuromuscular channelopathy that affects skeletal muscles (muscles used for movement). It is congenital, meaning that it is present from birth. Amongst other problems, it causes delayed relaxation of the muscles (myotonia) and rigidity. The disorder is caused by mutations in the part of an ion channel gene responsible for shutting off electrical excitation in the muscles, causing muscle fiber membranes to have an unusually exaggerated response to stimulation (hyperexcitability). Symptoms include delayed relaxation of the muscles after voluntary contraction (myotonia), and may also include stiffness, hypertrophy (enlargement), sluggishness of the muscles, transient weakness in some mutations, pain, and cramping. The disorder is caused by a genetic mutation involving the chloride channel of the muscles. In addition to humans, it is also seen in some goats, canines, cats[1] and one breed of pony.

The prolonged muscle contractions, which occur most commonly in the leg muscles in recessive mutations, and more commonly in the hands, face, and eyelids in dominant mutations, are often enhanced by cold and inactivity, and in some forms is relieved by repetitive movement known as "the warm up effect". The warm up effect often diminishes quickly with rest. Some individuals with myotonia congenita are prone to falling as a result of hasty movements or an inability to stabilize themselves after a loss of balance. During a fall, a person with myotonia congenita may experience partial or complete rigid paralysis that will quickly resolve once the event is over. However, a fall into cold water may render the person unable to move for the duration of submergence. As with myotonic goats, children are more prone to falling than adults, due to their impulsivity.

The two major types of myotonia congenita are known as Thomsen disease and Becker type myotonia congenita, the latter sometimes being called "generalized myotonia congenita". These diseases are distinguished by the severity of their symptoms and their patterns of inheritance. Becker disease usually appears later in childhood than Thomsen disease and causes more severe myotonia, muscle stiffness and pain. People with Becker disease often experience temporary attacks of muscle weakness, particularly in the arms and hands, brought on by movement after periods of rest. They may also develop mild, permanent muscle weakness over time. This muscle weakness is not seen in people with Thomsen disease. However, in recent times, as more and more of the individual mutations that cause myotonia congenita are identified, these limited disease classifications are becoming less widely used.

This disorder has high phenotype variability. Severity of symptoms can vary greatly between individuals and throughout the life of the individuals themselves. Part of this may be because there are over 80 different mutations that can cause the disorder, each with their own specifics, and also because myotonia congenita is an ion channel disorder, and ion channels are sensitive to internal and external environmental factors.

Adrenaline/epinephrine is well known to make myotonia worse in most individuals with the disorder, and a person with myotonia congenita may experience a sudden increase in difficulty with mobility in a particularly stressful situation during which adrenaline is released.

Due to the invisible nature of the disorder, the fact that those with myotonia congenita often appear very fit and able bodied, general lack of knowledge about the disorder by the general and medical community, and oftentimes by the individual themselves, and the potential for inconsistency with the symptoms, many people with myotonia congenita have experienced a degree of social persecution at one time or another because of the effects of their disorder.

Some form of myotonia congenita is estimated to affect 1 in 100,000 people worldwide.

Early symptoms in a child may include:
Difficulty swallowing
Gagging
Stiff movements that improve when they are repeated
Frequent falling

Possible complications may include:
Aspiration pneumonia (caused by swallowing difficulties)
Frequent choking or gagging in infants (also caused by swallowing difficulties)
Abdominal muscle weakness
Chronic joint problems
Injury due to falls

Interestingly enough Medavet, I have Hashimoto's Thyroiditis and low potassium, both of which, according to Wikipedia can cause similar pain and stiffness to Myotonia Congenita. But however, they are not even a quarter as bad as Myotonia Congenita. I'm so sorry to hear of your condition. I wish I had an answer for you. I'll keep you in my prayers.

[whatswrong527]

I was just recently was put on synthroid for hypothyroidism.  I developed pain all over my body that would migrate.  The doctor insisted that it couldn't be the medication.  Eventually, I quit taking the medication and all my pain disappeared.  Maybe I was allergic to it, but don't know for sure.  Hope this helps.

[MrsRG]

Thanks for your posting. I'm not on Synthroid. I'm on Armour Thyroid which is a natural medication. Synthroid is a synthetic medication. Many people don't do well on Synthroid. If you still need to be on medication for your thyroid, I suggest you ask your doctor about Armour Thyroid. However, don't be surprised if your doctor has never heard of it or refuses to prescribe it. It's a medication that has been around for over 100 years. Many medical schools don't even teach about it any more. Some doctors are under the false impression that Armour is a faulty medication that it's dosage isn't stable...not true. I've been taking Armour Thyroid for 10 years without any problems.

whatswrong527 I suggest you read Mary J. Shomon's book, "Living Well With Hypothyroidism: What Your Doctor Doesn't Tell You...That You Need to Know". I consider it the "bible" on thyroid stuff. You can get it cheaply at Amazon if you buy it used. It's easy to read and not at all boring or too technical and you will learn a lot about thyroid disease, not just low thyroid but also about high thyroid and thyroid cancer. It's a great book!

[kmac1980]

I'm having many of the same symptoms, Extreme fatigue, Body aches mainly extremeties, Severe chronic constipation, sleeping for 12+ hrs and waking up still feeling tired, I also have sore throat and run down feeling. I have celiac disease and was dx over 5 yrs which at first I noticed many symptoms disappear but now 5 yrs later I am having a whole bunch of new symtoms (symptoms).  I also have HIGH b12, and I am not taking a supplement, my GP was very puzzled by this and said she would have to get back to me on what would cause this, what I have researched is that your body doesnt know how to use the b12 properly and is ends up getting stored in your body.

[MrsRG]

kmac1980,

Thanks for your posting. I'm not a medical expert on B12. So I looked it up on Google. Here's what I found:

Because vitamin B12 is a water soluble vitamin, it is difficult to overdose or build up vitamin B12 toxicity. This is because excess amounts of water soluble vitamins not used by the body are typically excreted in the urine. While there aren't very many side effects of too much vitamin B12 to be concerned with, there are a few things you should be on the lookout for if you are supplementing vitamin B12.

•In rare cases, excess B12 supplementation may cause some numbness or tingling in the arm, hands and face.

•Excess vitamin B12 may contribute to anxiety symptoms such as panic attacks.

•Too much vitamin B12 may contribute to or cause insomnia.

•Prolonged excessive consumption of vitamin B12 may exacerbate the symptoms of mitral valve prolapse.

•Excess vitamin B12 intake may exacerbate hyperthyroidism.

•There appears to be a link between megadoses of vitamin B12 and certain cancers.

•Rashes may occur with excess B12 supplementation.


I was on B12 supplements for a long time because my B12 was low. Then suddenly this last 6 months when I had my blood test, my B12 was TOO HIGH...go figure. So doctor had me stop the extra B12. I go in this Monday, May 20th for a new blood test to test my B12 level among other things. However, I never had any ill effects from having too much B12, but everyone is different.

Having a sore throat and feeling tired can be symptoms of Chronic Fatigue Syndrome. Here's what the Mayo Clinic says about Chronic Fatigue Syndrome:

Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:

* Fatigue

* Loss of memory or concentration

*  Sore throat

* Enlarged lymph nodes in your neck or armpits

* Unexplained muscle pain

* Pain that moves from one joint to another without swelling or redness

* Headache of a new type, pattern or severity

* Unrefreshing sleep

* Extreme exhaustion lasting more than 24 hours after physical or mental exercise

kmac1980 I would talk to my doctor about Chronic Fatigue Syndrome since you are having a sore throat and feeling tired.

Also, have you had your thyroid checked? Often having constipation and being tired is a symptom of low thyroid (hypothyroidism). Again, here's from the Mayo Clinic what the symptoms of low thyroid are:

* Fatigue

* Increased sensitivity to cold

* Constipation

* Dry skin

*  Unexplained weight gain

* Puffy face

* Hoarseness

* Muscle weakness

* Elevated blood cholesterol level

* Muscle aches, tenderness and stiffness

* Pain, stiffness or swelling in your joints

* Heavier than normal or irregular menstrual periods

* Thinning hair

* Slowed heart rate

* Depression

* Impaired memory

There are many diseases and conditions that can cause what you are experiencing. If you are not satisifed with your doctor, if your insurance will allow it, find another doctor.

Good luck kmac1980, I hope your doctor gets to the bottom of your illness and is able to help you.