New to Fibro

Hey, I'm Jen, 24 from the UK. I am currently awaiting my referal appointment to rheumatology in the hope of a diagnosis of fibromyalgia. I have been suffering for 6 years undiagnosed. Repeated trips to the GPs for tiredness and chronic migraines. Have had every blood test under the sun, repeated countless times. Have had physio for varying pains along with an MRI. Depression and anti-depressants and extensive counselling. I'm hoping that this is the last step before a diagnosis.

I'm hoping to gain support and learn management techniques in order to build my confidence up and allow me to return to my very active job. I am a paramedic and am currently struggling to manage at work. I love my job but am currently on alternate duties, hoping once a diagnosis has been made and a management plan put in place I can return to fulltime frontline work. My fear is I will have to cut down to parttime which I really don't want to do.

I am not currently on any medication. I manage my pain with paracetamol and ibruprofen, heat packs and sleep. Working shifts it is difficult to get into a sleep routine but I am trying my best. I have recently started going to the gym and taken up swimming in the hope I can build up my tolerance and that the exercise will strengthen me and give me more energy.

If anyone has any tips or suggestions of improvements I can make to my lifestyle or advice of any management techniques I would greatly appreciate these.

Many thanks and heres to a pain free day and a good nights sleep!!

Jen x

12 Replies

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  • Hi Jen

    Good to meet you 😊

    I will write a longer reply later but what jumps straight out to me is that you're doing too much in one go.

    Many people believe that once they have a definitive diagnosis that from there on in everything will be "ok" and that you will suddenly have all the answers. Sadly it doesn't work that way.

    I've had Fibro for over 30 years and still struggle each day. I'm on a mixture of pain relief.

    The trouble with Fibro is that it is so unpredictable. One day you'll be able to manage a whole shift, no problem. The following day you might not be able to work at all.

    I'm so sorry that my answer must be sounding very negative to you. I just want to help you to understand that there is no easy fix to this horrid conditon.

    I also have CFS, anxiety and depression.

    I managed to work for 34 years and have 2 children but I personally think I pushed myself too hard for too long and that's been my downfall.

    As one of my fellow Fibro friends said Fibro is tailor made to each person. What works for me will not necessarily work for you.

    I hate to be so down beat but I just want to help you to understand that Fibro works in mysterious ways.

    We can all tell you what works for each of us but it is very much a case of trial and error and can take a very long time to get the right management plan for you.

    I want to wish you all the very best of luck and once again reiterate that I am trying to help although it may not sound like it.

    Hugs Lu xx

  • Thanks for your help. I know you are helping and I know there is no quick fix. I am just trying to remain upbeat about the management. I also have anxiety which drives me crazy and can make me very poorly at times. I have been depressed in the past but I wouldn't say I am depressed now (although the GP keeps trying to tell me I am and is the reason for my symptoms). I know its a day to day think, I just want to learn as much as I can so I can recognise flare ups and try all management techniques to find th best ones for me.

    Im loving swimming, I don't ache afterwards at the moment but I have to pace the gym as my levels are not where I want them to be. I am very stiff legged today so hoping that swimming later can loosen me up.

    For me the worst is my migraines and the pain I get in my shoulder. The other aches and stiffnesses I can cope with and I'm always so tired I'm just used to it.

    Im just craving getting back to work. But then thats me, I want to get there now, rather than build up to it. I just need to learn to pace myself.

  • Nicely put BlueMermaid1, couldn't have said it better myself.

    Good luck Jen, in finding a way to cope with this Horrible condition. I have had it for 12 yrs. Xx

  • fibro is a very personal condition we all have other health problems as well some people can manage to work other like me cannot it depends how severe your symptoms are and which of the problems is worse . fibro fog is a problem forget things had to type this three times as i keep missing letters outs a few of us do but we all vary once you get a diagnosis then will have a kind of this is what i am up again and see what you are able to do but at the moment you seem to be over doing it you have to learn to pace yourself. which is not easy take it easy

  • Hi jen, keep on doing what your doing :-) swimming and what you can manage. My advise can only be your health is so important and if it means cutting hour's on your job then so be it you have a long life ahead of you and always put you first :-) Stay positive like you are, rest when you need to rest.

    :-) x

  • I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and I genuinely hope that you find it useful, informative and loads of fun!

    I have quite a few different medical conditions and I am on a great deal of medication including Fibro drugs such a Pregabalin and Nortriptyline. However, when my pain becomes too much of an issue for me I do have a TENS Machine which I personally find very effective.

    I have pasted you a link to our parent site Fibromyalgia Action UK below:

    Fibromyalgia Action UK

    fmauk.org/

    I want to genuinely wish you all the best of luck, and I sincerely hope that you get a diagnosis one way or the other soon.

    All my hopes and dreams for you

    Ken

  • Hi Jen. I'm also a newbie but have found that my fellow fibromites are a font of knowledge and understanding and I have no doubt you will get many helpful responses. Welcome.

    Apart from drugs, the most beneficial thing that I have undertaken was a pain management programme. With their help I have learned to pace my life. This makes it manageable for me.

    Good luck with your trip to the rheumy. Hope it is of help and puts your mind at rest

  • What's a pain management programme? I'm not very good at pacing my life.

    So far swimming is the thing I find helps most then heat packs for my sore moments. I want to avoid medication as much as possible. I manage my aches by rest, massage and sleep. The only time I take meds (only paracetamol/ibruprofen) is when my shoulder is unbearable or I get a migraine.

    Im so used to having an irratic sleeping pattern that I wouldn't even know where to start to help amend it and have just be ome accustome to it.

  • Your GP will know if there are any pain management programmes in your area and I would imagine they are different in every health area, like the postcode lottery that people talk about. The one I took was over 12 weeks, one afternoon per week. It allows you to learn a little about options for you to control your pain, rather than your pain controlling you. It involved CBT, mindfulness, relaxation techniques, gentle stretching exercises and pacing to name the basics. There were classes by a nurse specialising in pain meds, a psychologist, a physio, along with specialists in other areas. Not all techniques will suit you so you take what is best for you from the programme.

    I was referred by my pain consultant. At that time it was because of severe Osteo in my neck and I was receiving nasty injections into my spine. It won't take your pain away, but it will help you understand enough to help you cope with it better.

    It is really horrible at the beginning of your journey, but with help things get better. You are not alone and we have all been through the wringer too. You've taken the first step. I hope things improve for you x

  • Hi Jen, I like you suffer mostly with pain in my neck and shoulders and tension headaches and migraine. I take Amitriptyline which is helpful for both the fibro symptoms and the migraine. I think it is a great idea to try and maintain your exercise levels although these may have to be adjusted to suit how you feel at any one time. I use a Wii Fit and do one of the dancing games this gives me cardio and some yoga which helps to keep things moving. I also see a Cranial Osteopath and have found this helpful in relieving some of the pain in my neck and shoulders. I have also used Kinesio strapping which has given relief when things get too painful. It is worth considering supplements such as magnesium and vitamin B complex as well as vitamin D as fibromites can often be deficient in these. Good luck in finding what works for you. Gentle hugs, Steph

  • I have recently been diagnosed with fibromyalgia. Please, take care of yourself. Can't believe they have not given you proper medication. For my I need it just to keep going. I'm in a wheelchair and quite far along in terms of disability. I'm waiting to be refferred to the pain clinic and a sleep clinic but any tips and ideas I'm given I will pass along for sure.

    But remember, your health is important and it is possible to overdo it and get worse and worse.

    I am shocked that you are getting nothing for the pain though. What a joke. Gabapentin is very effective as is tramadol, dihydracodeine and amatryptaline. They are the best pain meds to cope with fibro pain in my experience. Fight for yourself. The doctors can be difficult and unwilling but don't forget you are important and you know best what is going on with your body. Also take a friend with you to your appointments. Never go alone because you are more likely to be able to fight for yourself and remember everything if you have a witness and a supporter right there. I also find thatr they find it harder to brush you off if they see you have a witness.

  • Hello Jen,

    I was a Police Officer and retired through ill health last year after 29 years.

    The key thing for me is to pace yourself as you are in it for the long haul. The longer you can keep active and exercise, the better.

    I would consider trying a TENS machine to see if that would help any painful joints.

    Sometimes the body needs painkillers in order to enable the muscles to relax so please see your GP and do not suffer in silence.

    I am glad that to hear that you have had counselling as you need to look after your mental health as well.

    Do not be afraid to ask for help from your employer as they should be able to make reasonable adjustments for you. Whilst I am on the subject of work, if you are not in a union then consider joining one just in case performance issues start to raise their head in the future. I really hope that they don't but I have first hand experience how things can suddenly turn.

    I wish you good health and the best of luck with your job. Stay safe.

    Best wishes,

    Dave

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