UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

5 thoughts on “UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

  1. I’ve been diagnosed with everything from fibromyalgia, to degenerative disc disease, ankylosing spondylitis, chronic fatigue, and hypothyroidism/Hashimoto’s. I also only get a period once or twice a year…and don’t ovulate. So essentially, my chances of fulfilling my dream of having a child, are next to nil. Without ovulation/eggs, you just cannot get pregnant. It’s that simple.

    I am on slow-release morphine, instant release morphine, flexeril/cyclobenzaprine (muscle relaxant), amitriptyline (antidepressant), Synthroid (thyroid med), and gabapentin (nerve pain). I also give myself injections of ketorolac, which burn like hell. I often get the nurses telling me “ugh. How do you inject YOURSELF with that? Doesn’t it burn????:. Yes…it sure does. It burns like acid for a few minutes and then produces a weird metallic taste in your mouth. Also…my hip is kind of going numb from where I inject…but I can’t switch sites because I don’t have enough mobility to. My husband, bless his heart, has OCD…but will push past it to inject me if he has to. I only ask him when i’m really desperate though. I often feel like a burden.

    I hate that I couldn’t even get out of bed today. As i’m by myself, that means that I also haven’t eaten because I haven’t been downstairs. Now, i’m starving…but have been debating with myself for the last few hours about how to get up, and what to make/eat, and if the effort is worth it. I thought about driving somewhere and getting fast food so that I wouldn’t have to find/prepare food…but the debate has been ongoing for so long that everything is now closed. lol What a stupid argument with myself.

    It does make me feel slightly better to know that i’m not alone. That even though I may not have them in my life physically…there ARE people out there that DO “get it” and know exactly (or pretty closely at least…since we’re all different) how I feel.

    I’m having an especially hard night…but failure isn’t really an option, is it? So we buck up as best we can…and we just keep pushing and surviving the best way we know how to. It helps a little though…to remind yourself, that you’re not alone. Thank you.

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  2. Pingback: Fibro Daily | Thyroid Info - Fibro Daily

  3. I’m 47 years old and have had fibromyalgia since at least age 19 (found a medical note from that time frame when the doctor wrote a note: fibromyalgia?). I always assumed it was disc problems and didn’t know much about FM. About 4 years ago FM was confirmed by a rheumatologist. Every day my symptoms change, some last for months like toe pain, or upper abdomon pain, running a low grade fever for weeks at a time and then they suddenly disappear and it’s something else – migraine, rib pain, eye pain, and the aching all over is constant. Modifications such as lamps instead of florescent lighting in my office at work (florescent lighting kills me) however the entire bldg. has florescent lighting so it is impossible to modify that problem. I try to exercise as often as possible at the gym but I cannot plan that on a regular schedule due to pain issues. I have to go by the Level of Pain on any given day in what I think I might be able to accomplish and most days when I do feel less pain I over-do it trying to make up for the days when I cannot manage to much at all. It’s so frustrating and there are days when I feel like I am “dying” – and then thoughts of if I die – who will take care of work, my mom, my boyfriend and what would happen? FM has me leaving detailed notes at my desk (in case I die) – I mean – really – that is how horrible FM makes me feel most days – how sad is that? Really sad. I’m an over-achiever mentally and sometimes physically even with FM. I can’t take any medications due to the fact that I get “all” the side-effects which are sometimes just as bad or “added” health issues on top of the FM I already have (i.e. med side effects range from hot flashes, itchy skin, extreme nausea, etc.) oh yah – give me pills to alleviate pain but make me feel like throwing up every minute of every day – I don’t think so. I think if other people could live in my body for just one day – a handful of doctors perhaps – they might “find” a cure for FM.

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  4. Oh, so many of us know jsut how you feel. That painful question “Am I ever going to feel better”. I gave up asking that question a long time ago, but deep down inside I really think I will get better. Ever the optimist.

    Medicines, medicines, medicines! Maybe they can ease some of the symptoms but they can’t make everything better. I wasn’t able to go to any of the college tours with my son, and it upset me. But, if I had gone my son and Hubby would have too busy worrying about me. My son has lived in five different places since his freshman year (He’s on the 5 year plan) and I have seen only one.

    At least you know when to sit down and not overdo it.

    mo

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