REPOST: FOR INVISIBLE ILLNESS WEEK:Thyroid Disease And Fibromyalgia With A Touch Of Menopause

Don't give up

Image by quinn.anya via Flickr

I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it”  YOU GO GIRL!

I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.

I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.)  My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue.  My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid  (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.

She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.

I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)

Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.

Good For You, Great For Me

Today is a HAPPY day for me; for most others they would call it “normal.” After a good, solid night’s sleep (waking up only once and then able to go back to sleep immediately), I woke up at 11AM and felt good. Good, as in the absence of, pain and aches. Not just good, but GOOD, almost great. I had enough energy to get out of the bed and go down the stairs.  Feeling good is taken for granted by a whole lot of people but NOT to those of us who have auto-immune diseases, fibromyalgia or ANY chronic illness for that matter. Good to us is great. Unfortunately for some of us, to experience it  is sometimes rare.

When I feel sick I don’t know if it’s a side effect of the methotrexate (and plaquannel) that I am taking, whether it is my illness (Hashimoto’s Thyroiditis and Fibromyalgia) OR a new virus or bug I picked up (probably at another Dr’s appointment.)  Last week I took, (yes, I asked my doctor’s permission)  gulp,  double the amount of methotrexate, 8 pills (bad idea, really bad idea) on one day instead of splitting the medication, 4 pills, twice a week.  I did get approval  from the doctor to try….but it was definitely a really bad experiment.  My fault. Entirely. I take full responsibility for it.  Big, bad, miserable mistake but I  thought it could turn out to my advantage (so not) and I wanted to try to feel good for a few days in between the two doses.  It backfired, I was sick for an entire, miserable, can’t-get-out-of-bed- week. Never will that happen again. Maybe the lessons I needed to learn from this are:  when I go back to taking the dose twice a week (starting Monday) it won’t feel AS bad as it was last week AND see how much sicker I could feel every day?

I took advantage of THE DAY (wish I could light this up with sparklers)  by doing “normal” things which to me were thrilling. I went to the Orthodontist with my kids (just being able to GO was a treat)   and then I took them out to eat at the local diner. First, having teenagers by themselves, outside the house, is a joy in itself. There was barely any fighting and a lot of sharing food and actual conversation. Anyone who has teenagers knows this is a rare gift. Besides my son taking illegal sips out of my daughter’s  strawberry smoothie and my daughter continually playing with the straw in her water-glass, it was calm and very enjoyable. My son ate his brunch, thinly layered pieces of a croissant, french toast style, with bacon in less than 4 minutes. My scrambled eggs and toast (why do they taste so much better when I am not cooking them??) and fruit served as the extra filling station for both the kids. It was fun to see them reach over and grab bites and an even greater joy just to be with them. Outside the house. Like a real person.  Most people would take this meal for granted. Not I.

Being on a roll on this celebratory day,  my husband and I plan to go to dinner at the Asian Fusion restaurant we used to go to.  We have not gone out anywhere for months so Carpe Diem (seize the day).  For me, a good day, like today, is a celebration. I can honestly say that I don’t know when I will feel this good again. I wish it was more frequent, I wish I could predict it  but I can’t and I have to accept that.

I hope people who don’t have any illnesses will read this to know how good they have it, that just having an ordinary day makes us feel so special. I may not feel like this for a few more weeks or months but it allows me to remember how it feels and that there is the promise of another day, somewhere…. in the future.