Health Holiday Sick

Fibromyalgia for the New Year

December 30, 2017

I’m bringing in the new year with a possible diagnosis of Fibromyalgia, what could possibly go wrong? Ha. So, I finally saw the Rheumatologist. He told me he didn’t think my joints where the problem. I had started to feel that way too since the pain was changing on me so it wasn’t a surprise to hear that. He said it seemed more muscular and nerve related and that my joint pain was actually the muscles around the joints. Then he brought up the word Fibromyalgia. I was afraid of that. I’m not really sure if he has outright diagnosed me with it, but he hinted at it. I want to get tested on a few more things to rule them out before they completely write me off though. Still, if he wants to try and treat me for that with one of the very scary sounding medications I will at least give it a try.

If you do not know what Fibromyalgia is, it is basically an umbrella term for widespread muscular and nerve pain. There is no cure, no concrete knowledge on what it is and why it causes pain, nor is there really any medications to help it. Three have been approved to treat it but I have not heard good things. The doctor brought up trying cymbalta, but I’m a little afraid of this. First of all, not depressed, just in pain. Second, anti-depressants are a lot more dangerous than doctors let on. I was reading up on it and it will even cause withdrawals. 

I need to move to Colorado… lol jk

Anyway, if Fibromyalgia is what I have then okay, it sucks but now I have a name and diagnosis to it. However, if they stamp me with that diagnosis and don’t dig deep enough to be sure it isn’t something else, I’m going to be mad. That is what they did when they diagnosed me with IBS (another umbrella term for stomach pain issues). The gave me that diagnosis without even doing a CT or colonscopy! Guess what, I had a partial blockage that my surgeon thinks has been there since birth and was getting worse and worse. Yay! orz

So yeah, thankfully things like Lupus and RA have been pretty much taken off the table. With a negative ANA it makes it pretty clear. However, there are many other autoimmunity that do not have a positive ANA and need different kind of testing that does not involve just a blood test. Getting doctors to do more than blood tests and x-rays is really hard though. Other tests are painful or just plain pricey so I get it. Still, I don’t want to end up getting worse for something that could have been caught much sooner like my small colon issues. You know what sucks about that issue? While it is a lot better and won’t rupture and cause sepsis anymore, I’m still permanently damaged by it because that section of colon no longer works properly. 

I live my life taking colace, enemas, and prescription linzess that cleans me out like drinking a whole bottle of mag citrate. I feel like if a doctor had taken me seriously much sooner it could have prevented this to be so bad. My current PCP tells me that it could take many years for it to work normal or maybe never. Still, just thankful to be here and doing pretty good beside the fact.

Here is the low down on my issues-

  1. Widespread pain that throbs and stabs. It tends to get worse after I have been moving for the day. With it, comes all over muscle spasms and sometimes really intense muscle cramps.
  2. Morning stiffness that makes it hard for me to want to get up and get ready for work.
  3. Hip, ankle and back pain that makes it hard to get comfortable or sleep. Laying on my side in bed can feel like I’m laying on hard concrete.
  4. Burning and tingling sensations in arms and legs.
  5. Chest pain that comes and goes,making deep breathes uncomfortable and wearing bras unbearable. (Costochondritis)
  6. Tingling on the top of head that can last for days. Feels like bugs crawling on my head. Usually in the same spot every time. Luckily not painful just annoying.
  7. Sensations on the skin that make even the lightest touch hurt. Things like wind or bed sheets burn. (Allodynia)
  8. Headaches, neck stiffness, and jaw pain. Hard to tell if it is just one causing all the rest to happen.
  9. Frequency to empty the bladder, sometimes just a light cough or sneeze will cause me to pee myself. Not fun D:
  10. Lower back will lock up, making it hurt really bad to get up and try to straighten it out. Elbows and kness will lock up as well from time to time.
  11. Finger and wrist pain that can make holding my cell phone and texting a chore.
  12. Muscles feel so tight that when I’m walking I will have to limp or if it hits me with pain I will stumble and fall at times.
  13. Feeling of my arms and hands trembling, occasionally it shows itself and will cause a very fine tremor in my hand when I hold something with it.

So yeah, I think that got long enough. Fibromyalgia is a big possibility. I’m not going to deny it but judging by my issues, it almost seems like I need to see a Neurologist not a Rheumatologist. Anyway, going to discuss this with my PCP. The Rheumatologist was not mean and did a full look over my joints and stuff but he is pricey to see. If it ends up being Fibro I feel like my PCP can treat me well enough. 

So here is to 2018 and getting me back to feeling better! I plan to save up for an all over message and possibly go to some yoga classes to see if I can stretch some of these muscles. Hopefully that won’t make it worse. I want to feel better so I can get back to exercise and losing weight. I also want to sleep better and be able to do my job without fear. Wish me luck!

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6 Comments

  • Reply Mija January 4, 2018 at 4:47 pm

    I’m sorry about the possibility of fibromyalgia. If confirmed, then at least you’ll know what you have and can go from there. I am sending you positive vibes and rooting for you!!! Stay strong!

    • Reply ongaku January 9, 2018 at 1:00 pm

      Thank you ♥

  • Reply Cat January 5, 2018 at 3:27 am

    Sorry to hear that you might have Fibromyalgia 🙁 I vaguely knew what it was, but I didn’t realize that there’s no cure and not many options for medication. That sounds really rough. I think it totally makes sense that you want your doctor to be sure on that diagnosis. It’s not a good thing if they treat the wrong thing or miss something else because of it. I hope you can convince them to run more tests!

    Wow, that is quite a list of issues too. That sounds really tough to make it through normal day-to-day activities. I hope you can get a more certain diagnosis soon so you can move forward from that!
    Cat recently posted..Gaming year in review: 2017My Profile

    • Reply ongaku January 9, 2018 at 1:02 pm

      Yeah, I’m going to push it slowly so they don’t think I’m undermining them. Saw my PCP yesterday though and he was like, he believe Fibro exsist but he hates diagnosis people with it so I might have luck with him still if the Rhueme is no help.
      It does get tough, but there are good day – thank god. I push through as much as possible and just pray I don’t get worse.
      Thank you ♥

  • Reply Sue January 24, 2018 at 5:06 am

    Fibromyalgia sounds like an awful way to start a new year, or to have any time. 🙁 Widespread muscular and nerve pain, locking up of joints and lower back, chest pain, headaches, skin burning, and not being able to hold stuff, and it goes on and on…wow that all sounds terrible by themselves. Having them all together sounds unbearable @_@.

    Would going to a spa make it feel a little better? I wonder if being in those highly heated rooms, and also those hot tubs with running water may be good.

    I too hope you will get better, at least to the point where it becomes bearable, and you can function and make it through the days. Gannbatte! Praying for you too!!

    • Reply ongaku January 28, 2018 at 3:16 am

      I’m not sure how much it will help but it should feel good while I do it and a little pampering on myself just sounds like a good idea at this point, haha. Thank you ♥

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