Poetically Incorrect

Completely random, completely real.

  • 24th May
    2012
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  • 7th May
    2012
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  • 4th May
    2012
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Fibromyalgia Blog?

After making this post in response to someone’s concerns about fibromyalgia I’ve realized I can actually share a lot on the subject. My struggles with getting disability and everything is worth documenting as well, so I’m thinking of starting another blog that I dedicate specifically to fibro related issues. For others with this condition, what type of things would you want to see addressed?

  • 29th April
    2012
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Living With Fibromyalgia.

I’ve been there, I completely understand. I was 20 or 21 before I learned everybody doesn’t always have something hurt… that I wasn’t just really bad at coping with pain. In fact I cope extremely well. Doctors used to think I was faking to get out of gym class, or school period. I had more than one doctor tell me they didn’t want to see me anymore.

Have you been properly diagnosed for fibromyalgia through the tender points and such? If you haven’t please ask your doctor for a referral to a rheumatologist to get the proper diagnosis. There are some obstacles if you don’t have that diagnosis on record, even if you and your doctor know that’s what you have. Sadly, most areas do not allow your GP to do the diagnosis.

Since you’re so young I’m assuming you’re still in school? School is a full time job, no matter what people say. Fibromyalgia includes “Fibro Fog” which makes school work and just basic life things difficult or near impossible.

If you have the opportunity of staying at home for a year or so after school, do it. If you’re interested in college consider enrolling in one or two online courses you can do on your own time, but don’t overload your schedule. Spend the year making HEALTH your full time job. Look into some basic yoga to do in the mornings which I find doesn’t help with the pain but it does help with the stiffness and such.

Also look into passes for the pool. Water aerobics are excellent for fibromyalgia. And the hot tub will help with aching muscles. Set a goal to go to the pool four or five times a week. It is expensive so if you’re not eligible for a low income pass and can’t afford one, look into local hotels and motels. Lots have indoor pools and will allow non-guests in at a fraction of the cost of the local rec centre.

Keep a journal of everything - your moods, your aches, your concentration or lack thereof. Depression and fibromyalgia go hand in hand for many sufferers, and given this post I would say you’re suffering from at least a mild bout of depression. Some anti-depressants do help with the pain of fibromyalgia, and a more positive attitude can help too - stress makes the flare ups even worse! So speak with your doctor about possible medications. Being that 18 is around the corner there are some medications that they don’t prescribe to minors that can become available now - including Cymbalta which is not only an anti-depressant but is actually proven to significantly help with fibromyalgia pain.

Know that pills however, will never make it go away entriely. The worse thing I’ve found is trusting in those Lyrica commercials that say, “It can work in as little as a week!” I don’t have absolute numbers but I’ve heard as low as only 20% of users see an improvement on Lyrica, and many suffer from severe side effects. If your doctor decides to prescribe something like Lyrica (or any medication really) go into it with a positive attitude, but keep that journal I mention and document everything. If you don’t see a change within about 3 months speak with your doctor about increasing the dosage or weening off of it. Don’t spend forever on one treatment just because the doctor assumes it will work - fight to keep moving forward until you find one!

Finally, learn to listen to your body. I have a drawer full of various medications, anti-inflammatories, muscle relaxants, pain relievers… and if I took pills for every ache and pain I’d be perma-stoned. And still in pain really, as they don’t help for a lot of the pain. Lay on your back and close your eyes and just concentrate on your body. Are your muscles tense? Take some deep breaths and try to relax them. Are your joints aching? Try a hot bath or shower. Once you learn to feel your body like this you’ll know when you need to take a medication - and may be able to take it before it’s too late.

I’m 26 years old so I’m not that much older than you are, but my fibromyalgia has made me unable to work and unable to continue with my studies. I haven’t found my perfect harmony of pills, meditation and exercise and I still live in pain all the time it seems, but it has been worse. I really suggest you try some of what I’ve said, and feel free to drop me a message if you have any questions or ever just want to talk!

ninabunni:

I’ll be 18 years old, in 82 days… I don’t like this feeling. I know I’m still extremely young. But I didn’t have a “teen-hood.” Fibromyalgia completely robbed me of having a ‘normal’ young life… I feel sick to my stomach at the thought of my life just wasting away. Having everyone else reach their dreams and goals, while mine don’t even exist anymore. I don’t know what I want anymore. I don’t know where to turn anymore…

  • 10th April
    2012
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Pain, pain and more pain

I’ve been having some really bad side effects with my medications so this week I’m on a no pain killer or anti inflammitory cleanse. Can I die now? I have to cleanse my body of them because they’re not meant to be taken continually but wow am I ever hurting… never realized how much they were helping! Hopefully only a few more days. (Yes, yes, this is all doctor monitored.)

  • 30th March
    2012
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My body just hates me lately. I’m so tired all the time, and everything hurts so much, and the stiffness has gotten a lot worse despite the weather warming up. I’ve started the new medication the phsycologist prescribed which makes me even drowsier. I’ve managed to do a little bit around the house but not a lot.
I feel bad because I haven’t got markerspasm's package done yet. I know what I want to make I just have trouble getting the energy. Please forgive me, I will get it there in a week or two! Reilareila's package will go out then too.

My body just hates me lately. I’m so tired all the time, and everything hurts so much, and the stiffness has gotten a lot worse despite the weather warming up. I’ve started the new medication the phsycologist prescribed which makes me even drowsier. I’ve managed to do a little bit around the house but not a lot.

I feel bad because I haven’t got markerspasm's package done yet. I know what I want to make I just have trouble getting the energy. Please forgive me, I will get it there in a week or two! Reilareila's package will go out then too.

  • 27th March
    2012
  • 27

OMG WIN!

Well, I had my appointment this morning with the psychiatrist. Five minutes into explaining the fibromyalgia and everything he asked me why the doctors hadn’t put me on disability. When I said my age he shrugged and said, “But what was their reasoning?” I was confused and like, “I’m too young….?!?” And he said, “But you obviously can’t work!”

He said he would have no issue signing my disability papers - and whether it’s for fibromyalgia or depression he should be able to get it through. Because I CAN’T WORK. He emphasized that a few times. I was like, OMG THIS GUY SEES I’M IN PAIN!!!

I hate to admit I was skeptical going in… he came in late, was in this really snazzy suit, and he was Indian so I was worried about his accent. I had some trouble but he spoke slow enough like he knew his accent was an issue. And he didn’t rush it like I was so sure he would…. Since their resources are stretched so thin I thought it would be a quick little “K, here’s a new prescription” but no, he’d obviously read through my intake interview, he asked all the right questions, and he was visably upset when I told him my specialist literally wrote me a prescription and said, “See me in three months” after I said I was unable to work.

He upped my prescription to the maximum dose and gave me an additional one and made me an appointment for three weeks. He said my case manager at mental health will work with me to get the disability papers filled out and everything.

Seriously I am so happy. I was crying tears of joy as I left. To think I can have money coming in while I work at getting my pain under control instead of just trying to survive work each day… omg, I just can’t believe after five minutes he could see it. He saw me constantly readjusting my knee (which has been killing me) and he said, “That seems painful” and I was like… the doctor I just saw thought I was faking my knee pain and it hurt MORE than! I literally couldn’t bend it at that appointment.

Thank God there really is doctors/psychiatrists left that listen, don’t rush.

  • 9th March
    2012
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  • 8th March
    2012
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  • 7th March
    2012
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lara, in a trip with my own soul.: Ti alzi dal banco, appena la campana suona. É l’ora dell’intervallo....

fibromyalgiatakesmeaway:

Ti alzi dal banco, appena la campana suona. É l’ora dell’intervallo. Ti puoi rilassare, anche solo per qualche secondo. Due minuti per te. Ti alzi e come nel passo per la morte, senti. Il battito del cuore accelera in un solo secondo arrivando ad una velocità esorbitante. Lo senti uscire e in un…

I came across this post in the fibromyalgia tag. I have no idea what it says but I’m reblogging it to show that fibromyalgia and pain is something that is shared despite language barriers.

(Source: lararyevecchi)