Can't get a diagnosis...I believe I have fibromyalgia

[Samwill2]

I have suffered with chronic muscle pain, muscle knots and horrible fatigue on and off for 5 years.  I have acid reflux, PCOS, hypothyroidism, insulin resistance, high cholesterol, chronic diarrhea/constipation....if it isn't one it is the other. I have trouble sleeping and many nights may only get 3-4 hrs of sleep, even with muscle relaxers.  My primary physician believes I have fibromyalgia, he sent my to a rheumatologist.  The rheumy did not even take a health history!  I told him my symptoms which had recently worsened.  I was experiencing spasms and twitching in my legs and feet, along with numbness.  My toes have a bluish/purple cast to them and are ice cold year round.  My knees have gotten to the point where going up stairs is difficult.  The back of my knees hurt horribly when I sit with them bent at a 90* angle or when standing for extended periods of time.  The only exam the rheumy did was to push on my stomach, he did not want to see my feet.  I have PCOS and take a lot of meds. due to that condition.  I gave him a med list and the first med listed was Metformin ....shouldn't his first question have been, "Are you diabetic?"  especially with feet and legs going numb and poor circulation in my feet.  I am at my wits end, I am depressed about my health, I am only 38 yrs old and the mother of 4 boys.  Along with the fibro type symptoms, I have chronic kidney infections and have become allergic to macrobid and sulfa.  Ibuprofen gives me NO relief, tylenol makes it dull down some. I feel like a hypochondriac...going to the dr....  tests show nothing...but my pain and fatigue never stop.   Some days are much better than others, but none are close to pain free.  I work as a hygienist 3 days a week....after 8 hrs sitting with my elbows up to my shoulders and making repetitive motions all day, well I am wiped out, in pain, depressed that there seems to be no help on the horizon.   I am not a weak person, I carried twin boys to 38 wks ...spent 2 days in labor.  I delivered 2 healthy boys with a combined weight of almost 15 lbs.  That was 7 yrs ago...my boys deserve a mom who isn't sick all the time.  The amount of time and money and missed work trying to get a diagnosis may lead to having to snger be able to keep pushing my body, taking care of everyone else first. ell my home, possibly my job (I am the only hygienist in my office) I went thru the same thing with PCOS...I researched and diagnosed myself after believing that something was wrong....and when they ran the correct test, bingo, I had a problem...it wasn't in my head.    I don't have the energy to pursue this the way I did PCOS, and because I don't look sick, I am to suck it up and go along. I am lost..just lost.
AJ

[GBS_patient]

Hi, I read your post again.  Your story sounds so familiar to me, almost all of it.  I told myself if I ever got answers I would spread the knowledge and I just can't let this go without another plea.  Please get tested for Lyme disease.  See a private Lyme doctor because insurance doctors will use tests that only work for new infections and say it's not Lyme.  Insurance doctors do not treat chronic infections because they are pre-existing conditions.  Most people with Lyme infections do not recall being bit by a tick.  There are so many people with Lyme; most are misdiagnosed for years until called fibromyalgia, fatigue, pain, depression, ALS, MS etc.  But none of these dx ID the bacteria- so these dx are kinda useless.  It's a growing epidemic 2x more prevalent than breast cancer.  A great documentary is Under our Skin.  You can watch the trailer free on Amazon.  Even as I was dying from it I didn't look sick and people didn't understand.  I wish I had started treatment earlier because the infection is stubborn.  Don't wait until it hits so hard you can't function.  Just a few years ago I was wake boarding and spending time with friends, but have spent the past 5 years bed ridden.  I wish I had started treatment before I started getting allergic to things, including antibiotics.  I got PCOS too- maybe because Bartonella attacks the ovaries.  Rather than addressing and comparing every sx I'll say that it seems that All your sx are signs of Lyme.  Good luck to you.

[brendaelk65]

I definitely think you possibly have fibro, I have been diagnosed for 10 years and I have a lot of the same symptoms you do! Right now I am in a flare and it is insomnia, anxiety, muscle knots that are magnified! I have recently made a move to another town and it has been a lot of changes for me that is seeming to cause me tons of stress now that it is all done. I do not handle stress well. And when we look the same people think it is in our heads and we are just fine! You need to get to a rheumatologist and get a diagnosis that they are very aware of with your symptoms. I wish you the best and keep researching what is going on with your health.

[specialmom]

Oh, I so feel for you sweetie!  These things make life so hard.  I'm sorry you are going through an anxious time!  I am too!  And insomnia and knots, ugh.  Bad, right?  What do you to treat?  What do you do to destress?

[specialmom]

My doctor also said to not be afraid of using something over the counter like Zquil to get to sleep as insomnia makes everything so much worse!

[GBS_patient]

Anybody with these symptoms, please see a Lyme Literate Dr.  Do Not wait for help nor consideration of Lyme through standard medicine, it will never come.  Statistically, Lyme is rather common and essentially only diagnosed by mainstream Dr's If you suspect Lyme within a couple months of contracting and insist on testing, and Not as a chronic condition.  Millions have it but only A small fraction get themselves diagnosed.  I am 49yr female who first was bedridden at 23.  Every few years, the pain, fatigue and nuero illness would hit harder and linger so long it was as if I would never recover.   The pain only dissipated a couple years when I had my only child.  until last year! when my Lyme treatments cured my pain like a miracle.  I still have significant issues- Lyme has a snowballing ripple effect.  I had thought if it got bad enough Dr's would realize this pain is an infection and help me.  No, no. no.  It's quite black and white.  I went into a state of sepsis and they did just enough to keep me alive long enough to find other ways to stay alive.  BRU-TAL.  
Due to chronic infection I was barely ambulatory- spent 3 years bedridden with increasing heart attack symptoms.  Abdominal pain= liver.  had brain lesions categorized as infectious for a decade- no help figuring out why.  came back from my LLMD with test results showing Bartonella/CatScratchFever/Lyme but still no awknowlegement.  It was an informal end of life caretaker who clued me in because she happened to have it too.  So many times my Dr;s said 'Impossibe!'  the insurance Co's require them to be willfully ignorant.  The CDC does not address chronic lyme so it's Dr's are not informed on how to treat.  The insurance co;s use outdated testing methods (on purpose)  I only wish I had known this earlier because I have to take the long road back.  But listen, I had CF and Fibromuyalgia soooo baaaddd…..  Then one day, as if the damns opened through leaky gut, the pain in my abdomen spread Everywhere.  My heart was infected and I was in serious trouble.  You know what all the mainstream Dr;s said?  Nothing.  Very little.  The welcome mat srinks the more 'complicated' your illness becomes.  Good luck

[Shelby62817]

You should look into lyme disease. Visit canlyme.org and find the symptoms page.. then find a lyme literate doctor through the ilads website.

[SonyaLou1971]

Hi. I just came across your post as I was reading more into constant UTI's and antibiotic allergies, etc.  I'm a hygienist too & I have chronic fatigue and some of your same symptoms. I'm hoping you even see this, as it's an old post, but I'm curious as to what your Dr's have concluded since your last update. Care to share? TIA

[pjake]

First off, a Rheumatologist that doesn't sit with you, go over all of your medications and take a full medical workup on the first visit is one you need to get rid of.  There are excellent doctors out there and actually an Internal Medicine doctor is just as good at identifying Fibro as a Rheumatologist.  All of the doctors know now and I would rather go to an internist or a Neurologist to treat it as nerves are fully involved in this disease.  You have a lot of the symptoms in the fact that you don't get much sleep, but the symptoms you have are also symptoms of diabetes and some are symptoms of Lyme disease which is miserable to diagnose.  I have sleeping pills and STILL get no more than 3-4 hrs. every night and this has gone on since I was diagnosed after a severe depression about 11 years ago.  Someone mentioned above the 18 pressure points.  There are more than 18 now, and the doctors are finding more every day, but the original ones are the ones used to DX fibro.  It is a disease that you sometimes feel you would rather not wake up at all in the morning if you have it.  Severe pains shoot through your body, if your husband tries to touch your arm in the wrong area or your knee or ankle in the wrong area it feels as if a hot poker was put to your skin and pushed in.  There is a pain in the area of the neckline front and back that when you touch it or even wear something heavy, like jewelry, you hurt - bad!.  Under your shoulder blades it feels as if there are bones broken and not mending and is severely bruised on top of that. It doesn't hurt constantly in those places, but it never goes away if someone touches it or you touch it.  Unfortunately there isn't a lot in the way of medication that helps, but I found that Cymbalta, that I was taking for my depression, after trying about 6 others over the years, helps a lot and it is the only relief I have had in 11 years. Doubling up on the Cymbalta helped even more.  Nothing, not even the Cymbalta takes away the tiredness that you have, which is an all day, every day thing.  You can be up from your sleep for 2 hrs. and sit on the bed to do something and before you know it you are laying down and don't feel like you can get up because you have no energy.  This goes on all of the time and you become cranky without meaning to be, sleep deprivation does that to you.  Walking helps some, if you get on a pattern and stay on it the rest of your life.  Losing weight doesn't help, I am 134 now and could get down to 125 easily and have, but the pain didn't change when I  lost from 147 to 125. You do have headaches, muscle cramps, spasms, but not cold feet and toes, not toes that turn blue, not twitches (at least I never have and none of the friends I have with Fibro have those symptoms)  You do have muscle knots, and the spasms result in extreme pain.  If you don't stand from a seated position in at least 30 minutes you have a very hard time doing so because your knees and hips don't limber enough and the pain is excrutiating, which is a bugger in church.  Anyone that can work with this disease has my utmost admiration and I am glad I am 61 and don't have to do that anymore.  I used to have a note on my computer that said "stand up Pam" so that I would stand every 20-30 minutes and move around while talking to customers.  Also, for sure stress makes it worse.  I just went through a family medical emergency with my mother for the past 6 months and some days I prayed for death.  Not to sound melodramatic, but the stress was so bad it made the pain unbearable.  I am just now easing off of the stress and the pain is lessening to some extent.  So try to stay stress free. Easy for me to say, you have little kids and a job.  The horrible stress is  when we figured out that doubling the  Cymbalta made the stress and the pain better, when I went through the added stress and got so much worse, it was actually a learning lesson for me and my doctors.  The sad part about the disease is that you look great, you still put on makeup, you don't usually cry in public, you look normal.  People can't see your illness and they are usually unsympathetic about it.  At least everyone in my  family is that way except my husband and my son, and thankfully my Internal Medicine doctor and my Rheumatologist.  I hope you find your answer soon so you can feel better, and do find a doctor you can relate to.  There are so many good ones out there that will take the time,  If your doctor seems hurried to you, get another one. You hired him/her, you can fire him/her and look further. Not every doctor and patient are a good fit.   If the doctor doesn't take time to go through your medical history, drugs you are taking, diseases you have, you don't need that doctor.  Mine may see me and go through all of it and see me again in 3 weeks and he will go over every single pill I take again to make sure I haven't added anything else, even an OTC medicine or an herb. Good luck to you!              

[lunawolf1313]

Has any of the doctors done the 18 points check on you to see if it may be Fibromyalgia? My doctor whois a neurologist tried for months to figure out what was wrong with me and they still don't have everything figured out yet. Mine all started with a headache that never went away...for months they found out I had Trigeminal Neuralgia ...then I started swellling and having extreme pain all over. After many trials and errors and tests the doctor decided to try tapping/pushing me on the pressure points that I guess are triggers for Fibro...I didn't know if I was going to scream or hit him I reacted to 16 of 18 points and he immediately set me up with a Rheumatolgist. I am still new to this ...they just diagnosed me a few weeks ago and they are still going through medications to find the ones that will work best for me and some other problems that may to be connected to it  maybe or something separate.....just been a barrel of laughs (sarcasm there)  lol  I do hope someone helps you and if you're not happy with your doctor get a second opinion...it never hurts to do that if you feel uncomforatable with the results you are getting and always tell you doctor hoe you feel ...at first I wouldn't say much to mine and then I just not lost my temper but I came out and told him how I felt about what's been going on and I want answers to things and he actually spent the time and explained things to me....he been talking to me ever since   :)

[LazyMoose]

With exception to "insulin resistance" , your other symptoms are all on the list from Hypothyroid and / or adrenal fatigue.

There are a certain small percentage of hypothyroid individuals that are not on the correct thyroid med that their body excepts to be symptom free. There doc puts them on a T4 med, someware in the range and says you are better, but you might not be. I know , I was one of these people.

The ranges are derived from the average population. We all have specific thyroid ranges our body needs. I feel hypo at the bottom of the ranges, and way better towards what is thought  be the hyper side, but I'm not at all hyper. And a T4 med did not work for me.

Severe or prolonged hypo symptoms can be very much like hypo symptoms. This alone can take its toll on the adrenal glands as well.

And have you experimented with 800mgh of magnesium per day? Mag is food for muscles, nerves and the brain. Any mag but mag oxide is good. Mag oxide is worthless.

Unless you have fully mastered thyroid knowledge (its more confusing than most think), I invite you to post your last TSH 'free T3' and 'free T4' levels on the thyroid disorders forum here for some good interpretation of your current thyroid health. I am only assuming that you have not posted there?