Diagnosis

battleMost of you know by now that I’ve been dealing with chronic pain issues for a pretty long time, compounded by a back that is falling apart by the day.

The sort of good news on the back front is that I’ve gotten the go ahead for the double fusion – which I will be trying to schedule for some time in September – I’ll probably be AWOL for at least several weeks during that time period, but I’ll know more about my schedule when I get closer to it.

So today I went to an arthritis doc – and we talked through the other stuff I’ve been dealing with, and she ordered some more bloodwork and some x-rays, but she suspects I have Fibromyalgia.

TMI warning, blah blah blah.

Which is something I’ve sorta wondered about for a while, but I never looked too closely at it because a lot of people, including docs, think it’s a load of horseshit. Like it’s the basket they put you in when they don’t have an answer for you and all your other tests are negative. But when I look at the overall list of symptoms and the exacerbating conditions that can go along with it…yeah.

I only have some of the ten most common symptoms:

Pain all over
Fatigue
Sleep difficulties
Brain fog
Morning stiffness
Muscle knots, cramping, weakness
Digestive disorders
Headaches/migraines
Balance problems
Itchy/burning skin

But the related factors?

chest pain unrelated to the heart
shortness of breath
dizziness
nasal congestion
painful periods
palpitations
irritable bladder/interstitial cystitis
profuse sweating
tingling/numbness sensations
chemical sensitivities
vulvodynia (vulvar pain)
difficulty focusing eyes
the feeling of swollen extremities
dry/burning eyes and mouth

No, I don’t have all these symptoms all the time – sometimes they just flare up, like dry eyes for several days or waking up sweaty for no reason. But I do have them – and I’ve been fighting the vulvodynia battle since I was 19 and the IC since I was 25, and even back then fibro was noted to go hand in hand with those guys. Not to mention I can hardly walk nearly every morning because my feet are so stiff, and that’s been steadily getting worse for the last six months.

And of course, fibro is one of those things without a cure, though they can certainly attempt to treat it. Some of the drugs I’ve already been on for other things with little success, and to be honest I’m really not wanting to jump on another medical bandwagon. I’m already on painkillers all day for the back and I tend to have really bad reactions to a lot of drugs when I mix and match.

That being said, I’ll be willing to try some of the things she suggests, but not until after the fusion. Too many other factors as far as meds and pain management go with that for me to be comfortable messing with new chemical cocktails that come with their own sets of side effects.

But at least I have a name, and like GI Joe says: “Knowing is half the battle.” Right?

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8 Responses to Diagnosis

  1. Unfortunately trying to find out what is really wrong after many missed diagnoses can be the battle. 🙁 Hope you find a solution for your pain. ((HUGS))
    Melissa (Books and Things) recently posted..Throwback Thursday: Sold

    • allison says:

      Thanks! There’s really nothing more frustrating than knowing something’s wrong but not having any sort of reason as to why. At least with this I’ve got something I can wrap my brain around and try to deal with it.

  2. Susan says:

    Allison,

    I had to respond to your post today. I also have chronic pain; I have Lupus, Sjorgen’s, and Sacral Illiac disease, but the worst of my pain is caused by fibromyalgia. Fibro used to be considered a waste basket diagnosis, but no longer. Recent research confirms that this is a very real disease. I lucked out when I ended up in the office of a neurologist who specializes in pain management. The local rheumatologists are terrible, and he told me that he had to become a rhemotologist in order to help his patients. Many doctors have half heartedly prescribed muscle relaxants for me to treat the fibro symptoms, and when I would report back that there was no improvement, they would discontinue the medication. Turns out that they were grossly underprescribing the amount of muscle relaxant that I need. I take a very high dose of one of the newer muscle relaxants that doesn’t have sleepiness as a side effect. I experienced improvement wiithin the first hour of my first dose. Something to discuss with your doctor. Another medication that helps alleviate Fibro symptoms is Cymbalta. It is primarily used to treat depression, with a secondary usage for Fibro pain. I have to take the maximum dose, but it helps a great deal. Fibro is basically a condition where your muscles are systematically and chronically clenched due to muscle spasms, as I understand it. I hope these tidbits might help you. If you have any questions you think I might be able to help with, let me know. I went so many years with out the correct diagnoses, oor the correct treatments.

    • allison says:

      Susan – what’s the name of that muscle relaxant? I used to take Xanaflex to help me sleep over the last few years (off and on) – but the last few times I took it I ended up with an allergic reaction so I can’t take it anymore. (It never did much for me anyway as far as relaxing goes – just made me sleepy so I could rest.)

      I admit I’m a little afraid to look at trying new meds. I just tend to have such terrible reactions to so many of them that it’s sometimes hard to justify.

      On the other hand, I’d also like to get something like a normal life back, so after my surgery I will talk to the doctor about it. (She did say she wanted to put me on Cymbalta, so hopefully that will be a step in the right direction.)

      Thanks so much for sharing your story. 🙂

      • Susan says:

        Allison, I take 350 mg of Carisoprodol every eight hours; this medication is a generic of Soma.

        I am glad to hear that your doc has recommended Cymbalta, as that has helped me more than anything else. I think the beginng dose is 60 mg; it was not effective until I took 120 mg, which I believe is the maximum dose, but I have had no side effects. I used to have a deep, deep ache in my thighs, which kept me up at night, it would start up when sitting in a conventional chair within 20 minutes – that pain has been completely gone for several years now. I think the only relief I got from that pain was getting in a zero gravity position, and then the relief only occurred some of the time.

        Another thing to check out is sleep apnea. It seems that if you have Fibromyalgia, you most likely have sleep apnea. I was so embarrassed when I went for my first sleep study. I was sure I was wasting their time. Turns out I stpped breathing every 5 minutes, but I had no idea. Chronic sleep deprivation does very bad things to you, so please get yourself referral for a sleep study!

        From some of the symptoms you describe, I think you have more going on than Fibromyalgia. I hope your rheumatologist is good; there are a lot of crappy ones out there. (Aren’t I just a beam of sunshine. That is what years of dealing with our horrible medical system has done to me, I am afraid. A very bad attitude.)

        I think you are probably lucky you had an allergic reaction to Xanaxflex. I assume it is related to Xanax, which is highly addictive, and it’s effects are equivalent to a mild drunk.

        What I learned from my pain neurologist is to switch back and forth between between Loratab, or what ever, and a Fentanyl patch. They work on different pain receptors, so theoretically,
        you shouldn’t have to increase the amount of pain meds you take when your body develops a tolerance, just switch to the other type of pain med, same strength, that works on different pain receptors. Of course, after telling me about this strategy, my neurologist gloomily commented a we months later that it is a great theory, but doesn’t work in theory. (Another beam of sunshine.). But actually it has worked for me;I’ve been on the same dose for two years now, which is unprecedented for me. It is important to keep the dosage down as much as possible, Allison, because you are so young.

        Hope this is helpful to you. If you come across any handy dandy solution for the dry, itchy, burning skin thing, please share!

        Good luck with the back fusion operation. That is a big step, and kind of a scary one. However, I did have some cervical discs fused, and it did work very well; don’t know if that is at all comparable to your impending surgery. I hope you have the best of surgeons.

        Oh, another thing that helped a lot were Reiki atunements; level two is sufficient. Reiki is one of the best pain treatments ever!

        Keep us posted about your surgery, please.

  3. dee says:

    Hi, I relate to this A LOT….the thing is that I’m very underweight (despite eating a lot) and also anxiety, so….it could be anything for me (gut health, hormonal, low weight, etc). But in the morning I can barely move, my body literally aches and aches. If I sit too long, I get so stiff (the hamstrings and back pain is unreal) , if I stand, same aches, …its like lying down is the only thing to do and that of course = guilt, etc..brain fog and a lot of tummy/digestive distress. How do they diagnose fibromyalgia? Thing is I hate docs (long story 🙁 )…. My doc wants me on antidepressants for years now due to “that’ side of things….but I’m very stubborn 🙂 and try to look at things “holistically” and keep refusing the antidepressants…so…
    I then feel guilty cause I’m 32 years old and my hormones are now a mess and my body has deteriorated worse (former athlete , now when I walk I’m like grandma-slow)…and it pains me cause the last 4-5 years my writing productivity has been SO SO low….makes me feel so much guilt and regret 🙁
    I started seeing a nutritionist today….her take on it is that my low weight is causing all this, yet I feel truly like it is Fibromyalgia , etc….I totally admire how much writing and work u have accomplished through this. I know a lot of writers accomplish so much whilst battling chronic pain issues, yet I seem to be the sole one who can only concentrate/function enough for like 30 minutes a day ….oh boy.
    Walking up stairs is a huge trial too…short of breath and its like I want to crawl or be dragged up stairs.
    Sometimes its like I have to slide out of the bed in the morning, like there are heavy weights chained to me and weighing me down…
    Anyway….email me if u can/want…would love to know more about diagnosing it?

    • allison says:

      Hi Dee – the lousy thing about Fibro is that there is no blood test for it. They usually end up testing for everything else and if you’re negative, they start looking at the Fibro angle – a lot of it is based on certain trigger points around the body and how much pain they seem to generate.

      I will say that I have started a gluten free diet as of last week and it does seem to be helping. (Apparently allergic reactions to gluten have many of the same symptoms of Fibro – including the foggy brain and joint pain, so maybe that is something you could try for a few weeks or a month and see what happens?

  4. Susan says:

    PS. Sort about all the typos; I am quite sleepy. In case it isn’t clear, I was trying to say that my neurologist commented a few months later that switching pain meds that work on different pain receptors every 3 to 6 months is a great theory, but doesn’t work that well in practice. Evidently the brain is hard to fool. But it has worked for me, so far, and the benefits are so significant that it is worth a try, I think.

    Another thing: don’t let them treat you with methadone for pain relief. It does do a great job killing pain, but does terrible things to your brain and personality long term.
    Good night, er, morning!

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