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Living With Fibromyalgia - Online Support Group

More of a rant then an introduction.. sorry

I’ve been meaning to join this forum for months… Ever since I got diagnosed really… finally a couple weeks ago I made an account because I told myself I was going to read around here… But then I didn’t… And now I’m in bed unable to sleep and I figured out why… it’s so hard wired into my brain that the fibro parts of me aren’t real and I’m just lazy, overly sensitive and overreacting that I can’t even read hear without thinking what a load of crap… When I know it’s not!

I’ve got a “real illness” (psoriatic arthritis) and was diagnosed with that 14 years ago… but the last year’s I’ve been getting more and more pain and telling myself I was just lazy just kept going… until I was crying on my way home from work everyday… wanting to get under the train instead of in it… it turns out that wasn’t the PsA most probably… it was fibromyalgia… (with a couple inflamed joints thrown in just for fun)

And then even more stigmatized… the professionals at a psych center concluded I will need a Sunday evening til Friday afternoon admission in their psych ward for at least 6 months to get all the stuff in my head sorted out… They have a focus on chronic pain… which I think it’s a good place for me except that it will take “a while” before I can go there… When doctors say the waiting list isn’t that long is about 3 months… So I’m guessing it will be about 6 months of having no idea how long the wait really is… And surviving 5 minutes at a time…

Oh right I was introducing myself… I’m Cynthia, 32 and live in the Netherlands… and ranting is pretty much what I do whenever I write about anything… haha so this is kinda a good introduction in that way… I’m sorry but if I didn’t write this now I’m not sure how long it would be before I actually begin reading here…

I’m trying really hard to stop projecting onto others what the voice in my head is telling me (and to stop actually caring what people say/think)… And to be nicer to myself… but the “bad” voice is so much easier to believe…

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Hello Cynthia from the Netherlands! Thank you for joining the community and sharing your story. I am sorry that you have had a difficult time and appreciate your honesty. Also, I wouldn’t consider what you wrote as ranting more so than just expressing yourself. :wink:

We look forward to getting to know you better and wish you all the best!

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Hi Cynthia in the Netherlands, I’m Barb in Virginia Beach. Having any sort of pain is horrible day after day year after year. At lest you have a diagnosis for it and can start a treatment plan. Living in pain 24/7 is very depressing and yes u begin to wonder if u are making it up and is it as bad as I think it is. U have permission to get mad and rant, we all do at times.
Sleeping what is that mine goes in cycles I think, I prefer not to take sleeping pills due to the fact I feel hung over the next day and out of it. So some nights I just stay up and read or do something.
Glad u decided to post, you are not alone.

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Hi sweetheart, I’m Sandra from Sydney Australia. I am so moved by your rant, newly diagnosed to Fibro and going through all the crap that goes with it from the medical profession and people in general. I have a fabulous doctor who talks the talk with me, I research the hell out of everything especially drugs they think will help, mostly they give you horrible side effects. I now only take Lyrica and paracetamol for pain and a very low dose nortryptiline to help sleep. This is a condition we need to come to terms with mentally, acceptance that we have it, don’t bother explaining to people, take stock of what we can and can’t do, make use of the the extra hours we have not sleeping, curse and swear through the pain, be very wary of psychiatrists, they don’t know your pain and think meds is the only solution. Read about wellness and diet keeping your mind strong, we can function with this shit because we have no other choice. My son is 46yrs old and has terminal motor neurone desease, has lost use of both arms and legs and doesn’t have much longer to live. I get to see the sun shine everyday, changing of the seasons, helping other people, watching my grandkids grow. We all need to be strong and we can be. :cherry_blossom::two_hearts::purple_heart::butterfly::hugs:

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Welcome to the Fibro forum, Cynthia. Of course, I’m an old Psoriatic Arthritis friend, and we know each other pretty well. If there’s one thing that I know about you, it’s that you’re tougher and smarter than you give yourself credit for. But you are dealing with a pretty messy, tangled ball of symptoms and psychological stuff, and I don’t think those things can be easily disentangled. It’s hard, but like most difficult things, it’s definitely worth doing.

I’m really glad that “they” have a plan for you, although it’s not nice to hear that they can’t take you in right away, which is really what you need. Still, you will get there. Like people who start medications for Psoriatic Arthritis usually have to hang on for 3-6 months until they start working, you’re just going to have to be the patient patient (again!) until your turn for treatment comes up. Surviving five minutes at a time is tough, but all those fives add up.

I’m glad that you joined this group, and I hope that the other members here enjoy your smart and spunky writing style. (Note to other members: Cynthia is not a native English speaker … how’s that for amazing language skills!) Despite what you might say, I still think you are an awesome forum member!

All the best to you here, Cynthia, and wherever your search for care might take you.

Your old friend Seenie :kissing_heart:
from Livingwithpsoriaticarthritis and Moderator Support.

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