I'm 19, diagnosed, and don't know what do to?

Posted , 5 users are following.

Fell ill 10/14 and had Fibromyalgia written in my medical records as diagnosed by the first doctor I saw around 11/14. Seen various doctors since who suggest fibromyalgia but will not give me an official diagnosis and refuse to refer me to a rheumatologist. I am taking it that I do have fibromyalgia, but I am struggling to cope. I'm 19, out of work, and just managed to get onto ESA, but have no idea what on earth to do. In all honesty, I feel rubbish each day, just some days are worse than others. I am on amitriptyline 25mg which are helping a little but their effectiveness is wearing off now. I don't know if I should be considering work, or not considering work? I get rejected every time I apply regardless. I feel so worthless. Thankfully not suicidal - already been through that and don't want to go back there. 

What at should I or could I do?

3 likes, 7 replies

7 Replies

  • Posted

    It can be very difficult to cope when you have fibromyalgia and each day can be so different, presenting you with pain and tiredness. Your GP seems reluctant to refer to a rheumatologist but if your GP is familiar with fibro and you are able to develop a relationship him then you should be able to plan your treatment together. Regarding your job applications, employers often receive so many that they look for particular things when shortlisting such as spelling and grammar. Your statement in support of your application must contain information relevant to the job you are applying for and not be waffley. I use bullet points to highlight my main attributes which make my application stand out. Don't lose heart, it can be a rocky road and treatment can be trial and error until you get the combination which will work best for you.
  • Posted

    hi - I feel for you, at 19 it is alot to take in - you say you fell ill 4 months ago and a dr wrote  "Fibromyalgia" - were you fit and well before this happened?

    Don't know what your symptoms are but the common symptoms of fibromyalgia are:-

    Pain.

    Anxiety.

    Concentration and memory problems -- known as "fibro fog"

    Depression.

    Fatigue.

    Headaches.

    Irritable bowel syndrome.

    Morning stiffness.

    Then add in my case dry eyes, swollen glands the list goes on and on - but you need to see a rheumatologist - diagnosis is a matter of elimination which can take years and when every possibilty as been exhusted they then say Fibro/CFS.

    Have you tried to contact a local Fibromyalgia Support Group?

    take care - sue

    • Posted

      Before the doctor put fibromyalgia as his diagnosis for me, I was and still am suffering from severe migraines (one of which kickstarted all of this I think), PCOS, IBS and Depression. Currently, I'm achy all the time (some days are worse than others), extremely tired but sleeping can be very difficult at night- before I started on the amitriptyline, it was 3-4am before I'd get off to sleep, now it's between 12 and 2am. I can sleep a lot through the day though. I feel physically weak - I find it hard to write, hold things, stand, walk, etc. I was learning Urdu before this happened, but now I just can't concentrate at all...thinking is difficult. When it's bad, I feel like all my glands are swollen, I get very dizzy and moving can make me want to cry. 

      I have asked for a referral about 3 times already but they won't. I have seen a neurologist who was very casual and told me it was arthritis but of course bloods would show that up and guess what? I've had all the tests imaginable and I'm clear on every one. 

      Ive thought about the local support group, but I'm struggling with people in general as it is, so considering going further out of my comfort zone is scary right now sad 

  • Posted

    hi sorry to pull the plug on our chat but I have hit my wall and need to rest - I have only just found this forum so I haven't worked out how to sent Private messages yet so I will get back to you tommorrow if thats ok.

    sue

     

  • Posted

    Feeling for you...you are just sooo young to be dealing with this.....I can't understand why any doctor won't give you a referral to a Rhumo...obviously your not in my country..I'm in Australia....and we would be referred, no problem at all...I am on Amitriptilyne too I take one tablet a day at 8.30 @ night..I sleep well, and have a rather pain free night...which enables me to cope the next day..I've had Fibro for over z20 years now..it flares up then goes into remission...but it was the hardest when I was first diagnosed, getting the right medication and dosages took such a long time..but once that was achieved I could handle things much better...I also have other autoimmune issues that have come along with it, but I am managing them ok..  

    What is really really important is making sure you have good support and understanding.either by family or friends..I wouldn't be worrying about work right now...I'd get myself sorted first, having said that, you may need to work for survival..I don't know...but stress is such a shocker for Fibro as well as making sure you can get some quality sleep..be blessed ParadiseSeeker, keep blogging..it helps...stay positive no matter what ..it strengthens you..:-) xx

  • Posted

    look up programmes for brain retraining for fibro/me they give you the best chance of recovery ,its to diffitcult to explain how it works but i gauruntee if you watch the free samples on net your understand how and why your ill. that is the begining of recovery .and as your at the begining of this condition its the best place to start.

    get some magneisum flakes for your bath a good soak in this will help to easy pain by relaxing the muscles ,also helps with cramp or restless leg.you can also apply magneisum oil to your limbs for extra relif if needed but the oil stings a bit i am ok with it been using for yrs but some people find it to much, the flakes are fine .

    get a good multi vit/ mineral brand not cheap stuff from supermarket . 

    and try having reflexolgy that was when i was at my best , i now have accupunture as my lady who did reflex has retired ,and theres no one eles who does it where i live, accupunture works well on symptoms .

    reflex makes you feel better all over, you just have to remember to drink a couple of pints of water to flush the toxins and go home and have a sleep .then you should feel pretty ok till next treatment i always did.

      if you can stay of meds i would lots of meds have simuliar side effects of the condition, i.e ,fatigue, dizzyness, stomach upset etc. there are at least 26 symptoms to fibro and it does get worse.if your at the begining start doing stuff now to prevent it ,the increase in symptoms

    moderate excersise will help you from getting stiff you must do this ,i only mean a walk every day not a session at the gym.relaxtion get a self hypnosis  cd loads on line ,one for stress and do it daily ,stress is the biggest cause of this illness 

    do your best to control it daily  this will help imensly with pain and fatigue as it will reduce the chemicals being released into the blood stream . i hope this helps .this is a frown condition crush it as soon as posiable avoid stress that is the majour one start today and dont give up razz and you should have an ok life my accuputrist has fibro but shes is a very lucky girl she has a very lovely husband now and is very happy so her symptoms like fatigue and apain and digestion probelms are very miminmal 

    before she was in an unhappy marriage and her symptoms were much worse.

    she went all over asia on her honeymoon ,for 3 weeks, massive  flight times and changes ,would have floored me i would have been asleep for the full 3 weeks just recovering from flight ,she does roller disco traing for roller derby team i am so jealous , and on top of this she works two jobs , basicly the only differance is she happy and i am not ,  plus she has great family support , as well . 

    it does catch up with her sometimes but when it does she just rests and does some points . and shes fine in a few days . its so important not to be stressed as you can see from what iv just said . cool

     

  • Posted

    Hi , I was diagnosed in november by a rhumotologist they have referred me to physio at bath mineral hospital and also on a fibromyalgia course still waiting for my appointments , I think the difference is that I have been suffering for years prob 20 or more and always been fobbed off with meds of some sort, in my opinion u have to just keep on and on untill u get some anwsers I asked for mri scans and tests which alk came back normal but I no somthing is not right right, I have been taking berrocca each morning and I definitely feèl a lot ĺess tired not sure if its that helping though . My pain not to bad at the mkment but again it will prob flare up again . Im not sure what you want yòur next step to be but read up on things and have iñ your mind what you would like to happen next. And yes finding a job would b good posss part time and not to manual but the exercise is very good for it jyst dont over do things and I try and think positive . Take care

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