Not quite sure who to speak to??

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Not quite sure who to speak to??

Postby rebbecajd » Fri Sep 21, 2012 12:29 pm

Hi there, i'm new to the forum and would just like to speak to people about how they feel on a daily basis and what is normal and what may not be? :-)
My name is Becca and I have just turned 18. About a year ago I got diagnosed with Fybromyalgia and Osteoarthritis in my shoulders, upper back, lower back, neck and biceps and I also have a mild disc herniation due to spinal trauma when horseriding at a young age.
For years i went to the doctors complaining of back pains, spasms and my back locking, and for years I was told to swim, go the gym and work up my back muscles, so as I was young and your supposed to listen to the doctor I did, but the pain i felt whilst swimming was unbearable and now 4 years down the line I can hardly keep myself afloat in the water due to such intense shoulder pains.
However, the reason i'm here is just to generally speak to people with FM as it just always seems when i complain of back pain noone listens, even though i have been diagnosed and its all on paper i still feel that noone really understands what i mean when i say i feel like i constantly have a tonne of bricks on my shoulders?
Ever since I left school I have worked full time, and I have always loved working but due to my constant unbearable pain and spouts of depression I have had to leave work which for me has made things much worse. The thing that gets me the most is that my parents are constantly forcing me to get back to work and to stop fooling around as many parents would do with their 18 year old child, and it's so frustrating trying to explain to them that it's not as easy as it seems to live everyday life with FM and osteo, and that's where I need help, I need help to explain to them that i'm not just acting up as teenagers do.

Every morning I wake up feeling groggy and tired almost as if I haven't had any sleep atall, my shoulders ache, my back aches, even getting out of bed can be a task (weather depending as most FM suffers may understand.) I try everything to release the pain and unfortunately the only way I feel works is by cracking my neck (it makes an awful loud cracking sound either side - does anyone else do this??), many people tell me this is not good for your neck and I can imagine it isn't but it helps, and anything that helps I will do!! However some mornings my neck is so fragile I can't even bend my neck to the side without a sharp stabbing pain in my shoulders.

I go outside, everyones over the moon because the suns out and its boiling hot, not so good for me, i'm not even quite sure how to explain the pain but all i know is that i DO NOT like hot weather. So winter comes, will I be happy that its no longer hot? Not quite, because as soon as i step out the door my back seizes up and begins to hurt immensely, I often find that I am in so much pain that I have to tense my body up to be able to bear it, but this makes it no better infact it makes my body shake and my back worsens. If i happen to be carrying a bag over my shoulder that day, well that just tops it off, I often feel in so much pain that I just feel to chuck my bag on the floor and let anyone have it, I can't cope so end up having to carry it around in my hands, and thats no better!!

Going on long walks? I love them, I have a 5 month old cocker spaniel (who my mum bought for me to help me cope with my depression due to FM) and I live every day to walk him around the woods, but as soon as we have been walking for 5 minutes my shoulder is in unbearable pain, he may only be a puppy but even when he pulls on his lead constantly and my gosh does it hurt, after about 20 minutes of walking i almost feel to give up, I often get a very sharp pain in my left/right shoulder which is accompanied by a unbearable sharp pain in the same side under my ribs, which almost stops me from being able to breath properly (has anyone else had this??) I got taken into hospital for this as I had such difficulty breathing (I felt as if i was being stabbed over and over in my chest) I told the lady i had FM and she didnt seem to take much notice. After 24 hours in hospital in extreme pain and many tests I was released (whilst still in pain) and told that there was nothing wrong with me and just to go home and rest, but i now get these pains when walking for a long time or sometimes i just wake up with it.

Last but certainly not least, everyday tasks, such as drying my hair, writing a letter, even typing on this forum.. i cant keep my hands above my head to dry my hair, someone has to do it for me, when i write my shoulders ache and the same when I type, sitting down or standing up for too long can make me wince with pain. The worst thing is, even simple things like having my over-ear headphones around my neck can make me feel like i have a heavy weight on my neck.

There are so many more things that i want to speak about but i think for now this is enough as I know this has been a long post and i'll be delighted if anyone has taken the time to read and respond, as i mentioned at the start I have never spoken to anyone about any symptoms or pains I have and I have literally driven myself to the gutter spending everyday life feeling like i'm alone, being told that I'm well and fine when i know im not, it has become so bad now that i am suffering from depression and anxiety, sleepless nights and I have become very irritable, having very bad mood swings often becoming angry with people and extremely upset for no reason. :cry:

I would just like to hear from and speak to people who feel the same as me so that I dont feel so alone and so that I can prove once and for all that i'm not just being silly, once i've gathered up enough replies from people I will sit down and show my parents all of your posts explaining how you feel just to help them to understand what i'm suffering with. So i would appreciate it if you could all just give me a little explaniation of how you feel on a daily basis and also if you suffer with similar things to me.??

I look forward to hearing from you!
Thanks guys :-D
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Re: Not quite sure who to speak to??

Postby denys » Fri Sep 21, 2012 12:40 pm

Hi Becca and :welcome: to the forum :wave: I've moved your post into here as its the most appropriate place being your first post and hopefully you will get more hits.

Its sad to know that people as young as you are (and under) are suffering with what was commonly thought of as a condition that affects mainly women in their 30's upwards. We all know thats not true due to the amount of younger people and men that belong to the forum :shock: :shock: :shock: :shock: :shock:

Unfortuantely your story is one we hear over and over and I wish we had a magic wand that we could wave to make it all go away, the best advice you can be given is to pace and that is in every aspect of your life, listen to your body and if its complaining then stop give it a rest and then have another go. The worst thing you can do is to stop doing things completely cos then everything seizes up.

Anyway there is a section for teenagers and young people on the site so have a look over there for information too :wave:

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Re: Not quite sure who to speak to??

Postby FluppyPuffy » Fri Sep 21, 2012 3:07 pm

:welcome: to the forum Becca :wave: :wave: I'm sorry you've been dx'd with this awful condition at such a young age :hugs: :hugs: Now you've found us, we'll try to give you all the help and support we can :clap: :clap:

There is a lot of info and advice on here, so have a look and see what there is, you may come across some answers to things you're wondering about.

WRT your cocker puppy, using him to get out and about a little is a good idea. Not sure what you're working on exercise wise with him, but with him being so young and needing his exercise levels gradually increased, this could help you as well. Generally, for any breed of dog, you work on 5mins of exercise for each month of the puppies's age. As the puppy gets older, 5 mins is added on for each month if age, gradually increasing how much exercise he gets. If you were to try working along a similar basis you may also find that it is helping you in all sorts of ways, incl helping lift your mood if it feels really low and heay and dark.

Anything else you're wanting to know about, all you need to do is ask and someone will come along with a reply for you :flowers: :flowers: :flowers:
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