200th post! + More vertigo and pain.

So my last post was number 200 since March 12th, 2013 when this blog first started. I honestly can’t believe I have had that many. 200 posts in 2 years. Definitely doesn’t work out to one a day, one every 3-4 days maybe? I don’t know… Math’s not my strong point

I started the blog a while back to keep track of my symptoms and journey after being diagnosed with Fibromyalgia and Vertigo. I would love to say they are completely under control. They were for about a year, but the last few months they have been back. I just haven’t been blogging much about them.

It started back around August of 2014. When I got sick with that cough and they thought I had whooping cough. In the last 7 months my vertigo seems to have been slowly coming back and now it is bad enough that I am loosing my balance and falling again and getting nauseous.

The chronic pain is back as well. I constantly feel uncomfortable and my joints and muscles seem to hurt a lot. I have not really had an redness or swelling that I have noticed but find it increasingly more difficult to lay, sit or stand in one place for any length of time.

I am so bad at night the Cory has never came back in the bed from when I was sick a few months ago. I am constantly waking up and having to move. Even the new mattress did not help more then a few weeks. I get sensations of falling, sudden jerks (at night followed by the falling sensation) and feeling disoriented and nauseous almost on a daily basis again.

The pain keeps me up at night, makes me irritable and moody. I am missing work again (not nearly as much as last time), I am trying to push past it and keep going. I don’t like to be touched. Simply touching my wrist or shoulder can send me screaming in pain. I am so tired. Some days it’s a struggle to get out of bed but I am determined to push past it and think about other things.

I am coping with it better then I was before. I know what to expect this time I guess from having gone through it so bad the first time. I am being referred to the Atlantic Dizziness and Balance Institute again and also a Rheumatologist to try and see if we can get farther then last time and see if I can get back into physio. My family doctor suggested massage but honestly I don’t know if I can stand having anyone touch me right now.

I am not looking forward to it to starting the whole doctor thing again. Last time I saw a few different doctors all with their own opinions and no concrete answers. Just the diagnosis of Fibromyalgia which half of them didn’t even believe in. I am hoping that this time they may be able to come up with some concrete evidence of something. But I don’t want to get my hopes up to much.

5 thoughts on “200th post! + More vertigo and pain.

  1. I’m so sorry about your health problems! I didn’t know you had such problems with vertigo. It must be awful. As you know I’ve had problems with that too, temporarily. Yours seem worse though.
    Did your doctors don’t believe in fibromyalgia or did they not believe you had it? It would be very unskilled and unprofessional to not believe in the disease itself, it’s scientifically proven that it exists and has a diagnosis code. Maybe I’ve said before that my mother has fibromyalgia, and has a lot of problems related to it. She’s been very much helped by Gabapentin, it’s for neuropathic pain, maybe you should ask your doctor for that if you’re not on it already.

    1. Thanks, yeah a bit more then 2 years ago (in Dec 2012) I started to have some vertigo which got worse over a period of 3 months to the point where I was loosing my balance all the time and was nauseous almost 24/7. Even sitting still so much as moving my head a bit sent the room spinning. I started to throw up it got so bad. I made it to the end of Jan 2013 before I had to take time off work and went on a medical leave for 4 months. I had to see an ENT and have testing for benign paroxysmal positional vertigo as well as other things. They never found a cause. But I did find out I have mild hearing loss.

      In the same time-frame my family doctor who suspected Fibromyalgia from the other symptoms (joint and muscle pain and swelling, headaches, worsening eye sight, tenderness in many areas which I later found out were tender points they talk about with Fibro and stomach and gastro-intestinal issues – IBS) sent me to see an Internal medicine specialist who diagnosed me with Fibromyalgia. He put me on Amytriptoline which I have been on since then, 30mg a day. It was working pretty well until I got sick with that cough and whatever it was I had a few months ago. In the last few weeks I have been pretty much back where I started.

      One of the doctors I saw. The ENT does not believe in Fibromyalgia at all. He argued the point when I told him what the Internal medicine specialist diagnosed me with and said that he does not believe it really exists. I even remember him saying his mother was diagnosed with it and he told her about a book which explained most of the symptoms as being “mind over matter” or something like that. I lost all respect for him after that and stopped going. I didn’t tell my family doctor at that point because I was getting frustrated and didn’t want to feel like it was “all in my head” and since the Amytriptoline seemed to be helping a lot and so did the physical and occupational therapy I went back to work.

      I am sorry to hear your mother has had issues with Fibromyalgia. I would not wish this on my very worst enemy! It’s really horrible, especially when so many doctors here question it or don’t believe in it and in the fact that sometimes the symptoms can be so varied. It’s interesting that you mention Gabapentin, Cory has Charcot-Marie-Tooth and is on it for pain. I was under the impression they work in similar ways. I could be wrong about that. My family doctor does not want to up my dose, or change what I am on, he wants me to see a Rheumatologist and let them dig into it more. I am waiting for an appointment. For “urgent” wait time is 54 days and “semi-urgent” is 272 days… so it may be a while.

      1. I think that sounds terrible that doctors would question that fibromyalgia exists. It was the same here earlier but now it’s a well accepted diagnosis. I understand you lost respect in that doctor, he definitely doesn’t deserve any respect.
        Amytriptoline also helps for pain but it’s not as powerful as Gabapentin or Lyrica. For neuropathic pain Gabapentin or Lyrica are usually the first choices for neuropathic pain. For our cancer patients we sometimes also use Cymbalta which is an antidepressant that has shown to have pain relieving effects.
        Maybe seeing a rheumatologist could be a good thing for you. However, I hope you’ll get to see some good doctors who will help you.

  2. Congratulations on 200 posts! That is great that you have been able to keep your blog so active and keep a lot of records of your thoughts, especially in 2 years.

    I am sorry to hear that your symptoms have been back again. That would be really hard to cope with. I hope that the referrals can help, but it would be hard to deal with the touching. I just hope that you can get some relief.

    From the symptoms that you mentioned and looking it up, I think I might have a family member that should be looked at for this as well, and has been having no luck with a doctor. I will mention it to them!

    1. Thanks Kya, I am glad and surprised I have been able to keep it up for this amount of time. I just renewed the domain and hosting for another year, so you have at least another year of my rambling should you choose to read lol.

      The touching thing is rather new. Some days it is okay and other days I can not stand to have my computer in my lap, a blanket on me, sit in a chair, or if someone touched me in the wrong spot (wrists and hands and other “tender points”) then I will cry out or even scream in pain. My brother hugged me today and the pressure on my shoulder felt like he stabbed me. I actually put my hand up and felt.

      You family member may definitely want to get checked out. I hate to say this but it can really really be a long process for some people to get diagnosed. There is no test, like there is for arthritis (rheumatoid factor for one) and usually it is just a set of criteria and ruling out everything else first. Took almost 6 years for me and that was after being miss diagnosed for another 4 or 5. However I do suggest having them keep a diary of symptoms and then once they have those written down then try to sort the symptoms and see if they can take note of any triggers or anything that seems to lead up to symptoms that info can help a lot.

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