Hi everyone, my name is Jess and I am 26 years old. These forums are new to me but it was something that was recommended to me. Sorry in advance for the long post.
About a month ago I was diagnosed with fibromyalgia and arthritis in my lower spine (no further info about what type) after a year of unexplained symptoms and numerous tests and unhelpful health professionals. I also am deficient in b12 and get 12 weekly injections and deficient in vitamin D (but just take supplements). I have been prescribed Duloextine, 30mg and referred for Physiotherapy (although I'm not sure ehen that'll start due to the pandemic!)
Since being officially diagnosed, I have found it quite difficult to come to terms with. I know there might be changes to treatment in my life time and awareness is increasing but I hold some anxieties about the future (having children, it impacting on my relationships and work) and I have been in a depressive state since finding out. Although I am grateful to finally have answers, I am struggling to see the positives in things. I don't want to come across as wallowing but I feel I am in the initial stages of adjusting to the change and I know it'll be a process.
My main problems are restlessness at night due to pain in my back, shoulders and neck or numbness in my limbs, poor sleep, problems with balance and fatigue and feeling wiped after daily activities (probably due to poor quality of sleep!) and at the moment, depression and anxiety.
I was wondering if anyone who has had similar feelings have any advice on how to have a more positive outlook and any advice on how I could help myself? I would be really grateful for any advice hope everyone is coping okay during these crappy times.
Jess x
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Disneydoll94
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Hi jess! Hope you are well at this moment.. I am 34 and recently diagnosed fifth fibromyalgia so you are not alone do t worry things will pan out for the best, keep strong and try to be patient hopefully once the physiotherapist gets involved you will feel you are getting somewhere. I am also waiting for physio to ring me for the first time, this means we were both diagnosed at a very similar time. I’m going through a lot of pain exactly where you are so I know how it feels and it’s sad 😕
Thankyou so much for your response. I'm sorry to hear that you feel the same and had waited so long to get some answers.
I have started with Physiotherapy thankfully and I hope you've heard back too. I find it hard to continue using the exercises or trying things outside of sessions but I hope I can do better.
Hi Jess. Sorry to hear things are so tough. But you’re in the right place here. Welcome ❤️
It’s natural to feel anxious and sad. It’s a big thing to take in and adjust to. Especially when you’re so young. I was diagnosed with rheumatoid arthritis around the same age. Got my fibro diagnosis a bit later, but I know how you feel.
Don’t worry - there’s plenty you can do to start feeling (and thinking) better!
First of all, you need to tackle your physical health as much as possible. I would say you need more info on that arthritis diagnosis! You may also need some pain relief for it as it’s additional to the fibro. So speak to your doctor and don’t take “no” for an answer.
Gentle exercise is very helpful for fibro. Google “stretches for fibromyalgia” and even yoga classes for people with fibro and loads of you tube hits will come up. Just do 10 mins a day or so if you can, or more if/when you feel like it.
Eating “clean” can also make a massive difference. Some people don’t swear by it, but I do! And try a TENS machine for the pain if you haven’t already.
Now, for your mental health. It’s completely normal to worry about what the future holds. But you can have a good life, even with fibro ⭐️
I still work, I have a supportive boyfriend, I have a hilarious dog. I do art in my spare time.
Yes, there are some bad days and some really really bad days, but there are good days too. You will likely need to adjust some things in your life because of fibro - but it certainly doesn’t close all doors. Life is still there for the taking!
I would really advise some anxiety/stress relief at this point in time. Try to get into mindfulness or yoga or hobbies if you can. This will be really useful further down the line.
Also, consider speaking to your doctor about some counselling if things are really tough. Being diagnosed can lead to a kind of grieving for the life you think you’re leaving behind.
Hi I only been diagnosed in last few week although iv had this pain a long time on and off i have found so much food advice following this forum. I brought myself a tens machine yesterday and found it good on my muscle aches.iv googled streches that i been doing 3 x daily also been watching mindfulness videos to help me relax .been on 75mg of pregabalin for 10 days this has definitely helped with my arm aches that i was getting while asleep then waking up with dead feeling arms and also my jaw ache tmj .iv learned for me to use hot and cold on my aches and pains .i used a gel pad ( dog 1 large) to get relief also using a chillow as in gel pillow on my head and neck to help sooth symptoms at night this helps me and hope u r feelling better soon !
Thankyou so much for your message and for sharing the things that you've tried and found helpful, I really appreciate it. I too have a tens machine which helps with trigger points, it's become something I try not to rely on but gives short term relief for sure!
Ive tried heat from hot water bottles but never thought about trying chill pads, that might be worth a try!!
I can't thankyou enough for your message and I'm sorry that its took me so long to reply. I think I've been trying to accept things but struggled the last year.
There's so much within your message that has resonated with me that I couldn't even comment in each part. I just thank you so much for all your suggestions, they sound so relevant and helpful.
Its so good to hear that you've found a way to manage things and are in a place where you can share your thoughts with others.
Hello I have just been diagnosed yesterday and feeling the same way, I have had these problems for over 10 years and only just seem to be getting somewhere, waiting on MRI to rule out anything else and also physio to phone me.In the past 2 years I have been really bad to the point I am unable to work, but also haven’t been entitled to any financial benefit which has made a massive impact on my family, I am 36 with 5 children my partner works so I have to rely on my elder children or my nana to help on really bad days.
Just finding it hard to see a brighter future atm.
I'm so sorry to hear that things have been so bad for so long without any answers. I hope that you're a little bit further with things since this message?
It's such a shame to hear that you haven't been able to find financial help and haven't been able to work at times. I'm the same and currently applying for Pip but was rejected at first. Have you tried applying for this? Citizens advice can help to apply as well. I think it's an awful process on applying and having to justify why you need help and listing what you can't do but I hope that it's worth it in the end.
It sounds like you've got a really supportive family and I know it's hard to accept that we might need help with things but asking for help is one of the main things i've learnt that can help to manage my pain and keep me functioning. Don't get me wrong I'm stubborn and proud at times and do push myself but I learn the hard way that it's easier to ask for help.
You sound like an absolute warrior which is so inspiring and I hope that you are doing OK.
Hi JessI know it’s easier said than done but try and remain as positive as possible,
I have been diagnosed over 20years, and am currently experiencing only my
2 all war with the Fibromyalgia. Taken a hit in all joints and muscles this time,
but remaining positive to the current situation.
This was not the case when it happened 20years ago, sent myself down a very dark road. In the end I was struggling with depression more than the initial impact of the Fibromyalgia itself.
I work as an Engineer doing 12hr rotating shift patterns, and have managed
using self maintenance to keep in work. Don’t get me wrong some days I don’t know how to keep going but have worked through most issues.
I know I’ll get back on top of the current situation, just a case of recreating
the right balance of movement and exercise plus relaxation techniques.
I have a Relaxation Sheet Guide From the NHS, will get it on here for all to try. That’s when I get my son to do it not good with Forums😂, the main thing to remember is there’s always someone worse off than yourself.
I wish you all the best in getting your life back on track Jess.
Thankyou so much for your message. I'm so sorry to hear that you felt the same when initially diagnosed but it's really helpful to hear that you have found a way to manage things but also know there can be days where its hard. I totally appreciate that.
It's so good to hear that you manage with work and relaxation has helped. I love the idea of remaining positive and its my new years resolution after a year of wallowing last year. I hope I can become as positive as yourself, its really inspiring.
Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org
When you get a diagnosis it is normal to have a variety of emotions. You may be glad to finally have some answers - but there is also the reality that you now have a life long condition that you need to learn to live with.
There's a lot of conflicting information available on fibromyalgia but generally the best suggestion I would make is to educate yourself (fmauk.org/publications for our patient booklets), keep as active as you can add lack of exercise creates stiffness and muscle wastage which increases pain levels - the less you do the less you are able to do, and most importantly learn to pace activities. Listen to your body so that you learn what you can do on an average day without triggering a flare - then avoid the temptation to push yourself to do more on better days.
Thankyou so much for your warm welcome and response to my message. You're absolutely right that it's an emotional rollercoaster and I need time to process it all. I appreciate your suggestions and totally agree with the moving about and pacing activities. I'm not so good at not pushing myself to do things or saying no or asking for help but I'm working on it. I think it's a pride thing and I'm definitely finding it hard to accept that I can't do what I used to do which is hard at 27.
I hope I can get there though and find the right management plan to help flares and just general day to day functioning.
Thankyou for your response. I am so sorry to hear that you have been feeling the same, I hope you are a little bit further with finding some answers? I can totally appreciate this is a frustrating and lonely time but I hope you can feel able to share how you're feeling and your experience with us.
I do feel like I have muscle weakness, especially in my wrists and right leg which has caused a lot of accidents but I try to build the strength up and have got something out of attending Physiotherapy which might be suggested for yourself to give a go.
I am sending all my well wishes on you finding some help.
Have you read the spoon theory by Christine Miserandino? She has Lupus and manages her use of energy with spoons. Each day she starts off with 12 spoons which represents her energy and each time she carrys out a task she removes a spoon. If you Google it she explains The Theory and how it helps her cope with her hidden illness. It can also be used for Fibromyalgia
Hi there, thankyou so much for this suggestion. I have since looked at this theory and can so relate to it. I think it's good to share with my loved ones aswell so they can have some understanding.
I’m in a similar situation, have suffered for years but only recently been given a diagnosis following a stupid amount of tests, xrays, blood tests and scans.
I’m feeling pretty rubbish about it all and struggling to get my head round it. My GP has prescribed a load of medication and basically told me to draw a line under everything and move on. (Basically stop moaning and get on with life)!!
I’m struggling with the basics and reliant upon family for even the most basic things. Good sleep definitely helps though so if you can get that sorted you will feel a slight improvement.
If you come across anything useful please let me know.
Thankyou for your response and I am so sorry to hear of your experience. I hope it will help in some way to hear that you're not alone and that I have also received some not so helpful advice from health professionals. Sometimes I think they have no interpersonal skills lol. I think sharing how they've made you feel is so valuable as it's definitely made me feel that it wasn't just me. It sucks and they don't think how it could affect us but try surround yourself with more empathic people.
I think with it being a diagnosis given by exemption of other things, it's such a long emotional roller-coaster that it's understandable we would be left with a lots of different feelings towards it. Not only have we gone through a period of uncertainty, feeling like we have been prodded and poked but we are now having to dealing with what it all means.
The main thing I'd like to say is that it's bound to take time to process it all and that it's impossible to just 'stop moaning and get on with life'. I spent the last year wallowing and trying to come to terms with things. I have tried Counselling and IPT to adjust to this change, the loss of a lot of things and to share my feelings with someone impartial, which I really advocate if it's your thing. Pain management services can offer support too which might be a good route to take on requesting through your GP.
I am not there yet but I hope one day it will not define me and I can find a way to manage the symptoms as best as I can to lead a full filling life! And I sure as hell hope you can feel the same. Yes we may need to do new things that bring us joy and accomplishment but we will get there.
I could have wrote this myself only just joined today. It's all new to me too and the sleepless nights are debilitating me in the day. I hope you find some respite this week and have at least one good night/day xx
I'm so sorry to hear you're feeling the same but so pleased you've found us. It helped me massively to share with others who feel the same after getting some not so helpful advice and interactions from health professionals.
Sleep is such a massive thing isn't it and I do find I need a day to catch up on sleep, whether it's the weekend or adjusting work hours. I hope you can find this too.
I found sleeping with a pregnancy pillow helped to get comfortable at night aswell as putting tens machine on to drift off with.
Its so hard to not get frustrated when we feel pain or restlessness but sometimes trying to take my mind off it helps and listening to a podcast or mindfulness sound on Spotify.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
hope everyone is coping okay during these crappy times. 
only just joined today. It's all new to me too and the sleepless nights are debilitating me in the day. I hope you find some respite this week and have at least one good night/day xx
Fibromyalgia diagnosis
Fibromyalgia Diagnosis 
Recently Diagnosed at 24 
Fibromyalgia Diagnosis / Symptoms
