Hopefully an end to my fibromyalgia... I AM HASHIMOTOS (letter)

Hi everyone,
About 6 (maybe more) months ago I wrote on here saying I had found documentation showing proof that for some people fibromyalgia is linked to thyroid issues and I was sure that was the case for me. Turns out I was right. I just found out I have something called Hashimoto's disease...

Now, thyroid problems run in my family I just had doctors that were too stupid....Many doctors that were too stupid, to consider the source. I'm not saying this is the case for everyone but I wanted to share this story someone wrote.... THIS IS ME TO A T!!! (on a good note I am finally being treated by a wonderful doctor who knows what is wrong with me and will treat me so that I get better after 12 long years of feeling this way, the past 5 has been at its worst and has only been getting worse... up until now :) I HOPE.) I have found out I also have celiac disease. so no gluten and dairy is out for me too... all this is a big change but for the better... (fibromyalgia and hashimotos has such similar symptoms) here's the letter...

Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.

I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.

I'm so sneaky--I don't always show up in your blood work.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and any way I please.

I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.

Some of my other autoimmune disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:

That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.

Can't get pregnant, or have had a miscarriage?

That's probably me too.

Shortness of breath or "air hunger?" Yep, probably me.

Liver enzymes elevated? Yep, probably me.

Teeth and gum problems? TMJ?

Hives? Yep, probably me.

I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.

They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.

Not what works for someone else.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

I am Hashimoto's Disease.

I have been on thyroid medication for about two years from my primary doctor. I recently went to an endocrinologist who diagnosed me with Hashimoto's and increased my medication. I am now taking higher dose for about 2 months and have not noticed any difference in my pain. I have the same symptoms of feeling cold, extreme fatigue, weight gain, etc....the doctor stated that these symptoms are most likely a combination of hormones, thyroid, Fibro, and CFS. I am also in perimenopause which doesn't help either. I also get frequent migraines. In other words, I am a mess...LOL

Linda, i'm sorry you're going through such a difficult time with the ridiculous symptoms and pains. I left my doctors and went to a holistic doctors office thats known for their "magic"... Dr. Ng/ Brownstine. (located in MI) LMAO... all the symptoms and pains I was having he already knew of them. He took a bunch of blood work (and will be taking more in 6 months it sounds like) and went over results, my thyroid is very hypo!!! I TOLD my doctors I didn't care what their tests said SOMETHING WAS VERY WRONG!!! They would just say I was depressed (which I'm not, I will cry at times because I'm in pain...) and that the fibro was causing symptoms of hypo and that I'm really probably hyper... (geez glad I didn't let them treat me.) now we're focused on healing my stomach, which the doctor said is dangerously a mess due to my thyroid and celiac teaming up... i'm on 4 dif meds (all natural, I think) and a special diet (bye bye food I love :( ) once I start to heal he will give me new or more meds.

I guess what I'm saying Linda, is if you're not feeling better try someone else (and i'm sorry because I used to HATE when people told me that they didn't understand it didn't matter WHO I went to... I was never "fixed") but going to this doctor and having him validate how i feel and then to KNOW how to fix it....... I shake my head in anger that I allowed the abuse from other "doctors" (if thats what you want to call them...) and every time I left I felt more and more stupid like there was something wrong with me!!! DO NOT ALLOW IT!!!! WE ALL KNOW OUR BODY'S BETTER THAN ANYONE ELSE!!!! there IS someone out there that WILL listen and CAN HELP!!!!

<3

hi Lovett,

thank you... I am thrilled to be diagnosed!!! I was upset it wasn't JUST hypothyroidism and that is was Hashimotos (which is why the doctors were SO confused... it sounded like I was both hyper AND hypo... but only because my thyroid goes to the extremes when it throws a fit! lol :/

I'm really hoping you're right and it was my thoughts too, that maybe fibro will go away now since extreme, debilitating pain and fatigue are a main symptom :)

I was in my doctors office for 2 hrs (on the 1st I found out) and we discussed so much yet later that day and even still today I am REMEMBERING things I meant to say or discuss. my memory is SHOT!!! I have broke down in tears because I actually think I am getting dumber!!! I can't remember things I'm told 5 min ago!! when I talk I stop because the words fall out of my head... I have AMAZING thoughts I want to share but I can't remember what I want to say long enough to share them... and I can NEVER think on my feet anymore! (i think thats the term???) :(

anyways thank you again, sorry I go into a rant sometimes... just the fact I remember what I want to say has me outta control. lol

I hope you feel better and that your thyroid stays in check! who knew something so small could be so toxic and dangerous to your body and health. <3

I have hashing and this is exactly how it feels…
That’s for sharing!

I hope it’s helping knowing to aid your recovery
Unfortunately my doctors are not on the same page as to it effecting my fealty issues but I think it does.
So does my endo and I see her again soon.
Known for a long time I hypo but just found I have hashi.

Crossing my fingers that knowing will help!

Good luck!

Let us know what happens

Hi Michell,

You know, it's really depressing thinking about how some illnesses are so similar to others that doctors confuse them and we don't know what's going on in our own bodies. The list you present here is like a mirror of fibromyalgia. I'm glad that you've printed it here so people get the message and get checked for it. Some here may have it. I know that quite a few fibroites have hypothyroidism. It surely seems like there is a connection. So thank you for sharing this.

Meanwhile, I hope that this means that you now have a means to regulate your illness and feel better! I hope you never have to come to this site again. I hope you now get to live a normal life.

Blessings sent to you.

Petunia

Hi Cola, thank you so much,

sorry your doctor isn't acknowledging the connection.. I think thats a big part in getting better and getting the support you need. I'm happy your endo agrees though thats really good and i'm happy to hear you see her soon! maybe you can mention something to her...

anyways yes, thank you, I hope this will help and that I can/ will heal.

I will definitely keep everyone up to date. <3

Hi Avenk,

Thank you so much, it is! (in the sense that I know what's wrong and have someone to help). I'm hoping this may help others that have a thyroid history in their family as well.

<3

Hey all! I need advice! I was looking over all of my blood work and the results that are posted to my chart t Hopkins. in numerous tests it suggested very low immuglobins as well as suggeted utoimmune disease. (Chart said specifically graves/Hoshimotos) if you read this on your chart and your doc said he was not concerned about that how would you react? I'm so tired of being poked and prodded like a lab rat. Should I bring the report to his attention I know he is more concerned with the brain and nerve issues, but I'm concerned about the blood results as well. I know I have bad nerve damage in right hand n wrist which is bad for me since I'm right handed. Someone please give me advice. Gentle hugs, because Today I can't handle much of nything as my body aches

Hi Petunia,

I completely understand what you're saying... AND IT'S TRUE!!!

I would go to the doctors saying "something is REALLY wrong!!!" and explain I'm getting worse and not even functioning anymore and need help... I would say this is different.. this is new... It's not the same issues/symptoms and the doctor would say "no, it is... it's just your fibromyalgia there's nothing we can do, you're fine." but I wasn't.

I think this is the most frustrating about fibro or thyroid or other autoimmune diseases, unless there is some obvious clear cut sign THIS is what is wrong with you... then it is very likely you are, have been or will be misdiagnosed at some point! They DON'T know our bodies WE DO!!!

I've been to so many doctors I just about gave up. My mom made and appointment and I had to schedule it 7 months out because the wait list was so long, but this doctor knew all my problems before I said anything (he did 6 tubes of blood work and other tests a week prior.) This letter is why I posted this.. it is SO important that everyone knows this MAY be a possibility for some, especially if it runs in the family.

HUGS TO ALL

ps. sorry it took so long to write back I had a burst of energy and just as quickly it faded. <3

I’m happy to hear that they finally found a diagnoses for you. I know everybody is different. I was diagnosed with hypothyroidism and Hashimotos’ almost 17 years ago and I was just diagnosed with fibromyalgia about two months ago. My fibromyalgia symptoms probably started within the last two years. They tested my thyroid levels when I went to see the Rheumatologist and my levels are fine and that is because I have been taking Synthyroid for almost 17 years now. I heard the two could be connected but I have had only a few problems with my thyroid. I hope it all works for you and you start feeling better.

Hugs!!