Just recently diagnosed

[Amanda1967]

Hello.

I have just been diagnosed with Fibromyalgia and don't know which way to turn and worried sick about work, relationships and the future. As well as the pain I find the fatigue unbelievably difficult to cope with. It's like my body suddenly shuts down and I feel so unwell with the tiredness and lack of energy. I find it really difficult to express how I am feeling to family and friends. I cant explain how tired I am, and it feels like I am part of a stigma. The condition isn't talked about, and when you are diagnosed, no one seems to understand and I must admit it is a very lonely place. The pain, extreme tiredness/lack of energy, depression, irritability and all the other small things that seem to be happening like shooting pains in my joints that are all very random is relentless. I fear that I am not going to be able to work at this rate.

I just wondered if there is a way I can manage this condition which helps people around me look at me and see that I am trying to combat it. As all I feel that I am doing is complaining, struggling to move and then suddenly having outbursts of crying.

Any help or advice would be really appreciated.

[Hamishpin]

Hi

I feel exactly the same as you. I have started a chronic pain clinic programme which is helping. It's good to meet other people with the same condition. The course has made me feel more positive but I am worried whether I will be able to go back to my full time job.

I feel so exhausted all the time too, I just don't feel that I am getting over my flare up this time. Stress can have a big impact so I am working on trying to reduce the stresses in my life at the moment.

[Amanda1967 in reply to Hamishpin]

Hi.

Thank you for responding and sharing your experience.

The fatigue and tiredness is a massive problem for me and I am worried about working as I have an hour commute to work each way. My job is very stressful working with homeless people. I am so tired and I feel that my body shuts down and then feels like a dead weight. I can’t seem to move due to having no energy.

It’s good to be aware of the stresses in our lives. I have had to sit and try to let go of a lot of trauma and stress. It’s hard and realise how all my life I have been always worried about something. I am glad that you are doing the same, but worrying about working full time is another worry with added stress put on you although I fully understand your concerns.

You have to take care of you and working full time is so very difficult. I am really struggling with it. Is there anyway you could reduce your hours?

Thanks again for responding

Amanda

Xx

[Lily39]

Have you tried acupuncture? Not a cure and pain relief is temporary but it does make it more manageable.

[160622]

Hi Amanda

You are not alone, you are right about nobody understands as they don’t have it and your symptoms are invisible. The thing with Fibro is you have to think of yourself as it can be a battle day by day. I was 23 when I felt like you did, I’m 53 now , I carried on wondering what was happening, had physio but nothing else. I was finally diagnosed in 1999, felt so let down by doctors and am so glad that sufferers are getting diagnosed quicker now. I have been through all the symptoms and still do but I accepted how I was had various medication , lots of highs and lows over the years struggling to be positive and work, couldn’t claim PIP , losing jobs etc. I suffered with mental health 2yr ago and nobody came, I didn’t ask for help and those around me just thought I was going through bad patch, the menopause and Fibro. I’m glad to say I’m now strong again as I learnt to put me first, learnt to say no to others , found Mindfulness and meditation, don’t take painkillers. Iv had to learn the hard way with Fibro but you can start now, listen to your body, the fatigue can be worse than pain, you are burnt out and need rest, use heat on your pain and cold if you can stand it, repetitive gentle excercise, take time out for you but ASK for help, Fibro can be very debilitating but it can be managed if you accept and try to beat it which I have , even in my low times I was determined to get back up, it’s not always easy to stay positive, I find that’s a battle every day, if a negative comes into my head I shut it down and replace it with a positive thought. Hope you find this helpful I know it’s hard but don’t let it beat you, here if you need any help xx

[Amanda1967 in reply to 160622]

Hello. Thank you so much for responding and sharing your experience. You sound very strong and have learnt to manage the condition in a really positive way, despite really hard times.

I hope that I can get to where you are in managing the condition and relieving my stress, anxiety and putting me first. It’s not something I have been able to do before.

Thanks again for sharing with me. Xx

[160622 in reply to Amanda1967]

Anytime you need help or just want to offload message me, really try the meditation 🧘‍♀️ it helps with stress and anxiety, I also take vitamin D every day, green tea and lemon tea , helps the immune system, your life has to change for the better but you have to look after yourself , take care xx

[Blackwitch]

Hi Amanda

I have fibro along with RD, OA & a spine that’s getting worse. I had to give up work six years ago following surgery on my back. I have taken so much medication over the years, including the maximum dose of Paracetamol, but on Saturday decided to stop Paracetamol just for a day to see if I could cope without it. It seems it’s a drug that you don’t get withdrawal symptoms from. I know a lot of people dismiss it too, saying it doesn’t work but Sunday was the worst day I’ve had for years. I can’t begin to say how I felt. Needless to say, I started them again on Sunday night. I’m improving again & obviously I take other meds as well but it taught me a lesson. Don’t underestimate Paracetamol!

Obviously, this is just my opinion & it will be different for others. I hope you can find something that works for you soon, Amanda. xx

[Amanda1967 in reply to Blackwitch]

Hi. Thank you for your response. I am so sorry to hear that you had such a bad day after coming off the paracetamol.

Last week I had an abscess on my gum and was taking ibuprofen and paracetamol for about 5 days non stop. It cleared all my pain and swelling of the joints. I too have been also diagnosed with osteoarthritis at the same time as the fybro. Within 24 hours of stopping the pain killers all the pain and swelling came back. I realised at that point that this pain is just not going away in its own and that I hadn’t been imagining it.

I am due to see my GP next week to talk about medication.

I am glad you are starting to slowly improve again. Thank you again for replying to me

Xx

[YASMINTINA FMA UK Volunteer]

healthunlocked.com/fibromya..., hi there and welcome, what steps has your doctor taken to recommend any pain relief for you ?? It is not for everyone taking meds but I do rely on codiene some days. Yes we understand , people don’t always get it , have you printed off any facts sheets about fibro, I did get my hubbie ,close friends to have a read , mostly now they are all pretty good at understanding and giving more support to what we go through on a regular basis. Have you had a chat at work to let them know about your diagnosis at all ?? . I’ rely on my Epsom salts baths, gel to rub on certain places, good old hot water bottles at night when I’m resting. Some people have used a tens machine as well. Hydro pools at the hospitals are helpful I’m told if the doc can refer you, i havevposted a link above if you would like to lock your posts as onlybpir community can see. Xx

[Amanda1967 in reply to YASMINTINA]

Hello. Thank you so much for responding.

I had an appointment today with the Fybro Clinic and they are referring me on a self management fybro placement and for counselling.

My appointment is next week with the doctor to discuss pain relief. My main issue is the fatigue which is so random and knocks me out completely.

Thanks again for you advice and Information xx