New Fibromyalgia diagnosis, I am so worried

[ktg17]

Hello,

I have dealt with chronic pain for over a decade, ever since I was a child. I finally saw a doctor about it and they referred me to a specialist who thinks I have fibromyalgia. I am very stressed about this potential diagnosis and do not know what to think or what to do. Any tips on handling the pain and fatigue are appreciated. Please I am so alone and so desperate.

[LoneEra]

Hello and welcome 🌼 You are certainly not alone here! We have all been through this experience.

I totally understand that a diagnosis can seem scary...but actually it’s the first step to learning how to manage your pain better. Once you know what you have, you can learn ways to make life easier with it.

Until you have your diagnosis confirmed, it is tough to give you specific advice. The specialist will hopefully help you with some suggestions for meds to try once the fibro is confirmed. And potentially give you a physiotherapy referral too.

In the meantime, you could try simple things like mindfulness and having an Epsom salts bath to help ease the pain. Pacing yourself can also help with fatigue.

Once you have your diagnosis confirmed, there are more suggestions I will share with you.

If you have any questions at all, please feel free to ask x

[Elizahl]

Hi you are not alone we are all learning together. Some are further along in the journey than others but I am not much future alone than you. I am currently trying to find medication to suit me I tried amitriptyline but it was not for me I am now going to try lyrica. I have been doing yoga and physiotherapy to try and help build my strength back up.its not an easy diagnosis but it is one we can live with we just have to mind ourselves a bit more. If you want to vent or ask questions anytime that's what is great about the group have a good nosey and it might help you to begin. Write down any questions you may have as you go for your doctor and don't be to hard on yourself life is hard enough good luck on your journey xx

[Dinkie]

Hi and welcome, please try not to get stressed, regardless of when or where you get a diagnosis it is just a label. You were and are exactly the same person before the label is pinned to you. It is scary, my rheumatologist just wrote fibromyalgia on a piece of paper and said that's what you have go research it, I don't have time to discuss it and we don't treat it so I am discharging you back to your GP. I had never heard of fibro didn't know how serious it was and found myself crying in the car park.

Before you see the specialist please keep a diary so that you can explain exactly how you feel and maybe what you think triggers you feeling worse.

In the meantime if you haven't already heard of the spoon theory this may help you explain to others about fatigue and also help you learn to pace yourself. Epsom salt baths help with muscle pain, so do wheatbags, hot water bottles, biofreeze gel, tens machine etc. Fibro is different for all of us and what works for one may not work for another.

Many of us cannot tolerate prescription medication so rely on diet and other things to help. For me a processed food free and refined sugar free diet help. Not to say that I don't indulge sometimes, I do but I realise I will pay for it in the next few days. Some do yoga or tai chi, it's important to partake in some sort of gentle exercise. The art of pacing oneself is still my work in progress as it is human nature on a better day to get things done that have been outstanding during the not so good days.

I also use hypnotherapy and chiropractor when funds allow.

Your specialist may refer you for CBT or the pain clinic.

Feel free to ask as many questions as you like, we have all had to tread the road you are now on. We are generally a friendly supportive bunch who don't just talk fibro but photography, humour, knitting - you name it there is probably someone on here doing it and sharing their successes.

[Ty63]

Hi I have just been diagnosed too after suffering at least 10 years of pain and your right I feel very alone too ... people just don’t seem to understand at all what it is and how bad it makes you feel ... hope your ok and you can always talk if u need to

[KMatrix]

Hi sweetie, once you are on this site you are never alone! I'm one of the lucky ones, amitriptyline and naproxen help me hugely, you can't beat a good nights sleep! What helps more than anything is trying to keep my sense of humour, the lower you feel the more you ache and the harder it is to deal with. What ever makes you feel happy do it! Dance around your kitchen, sing as loud as you like, what ever it is, go for it. 😁 It does make you prone to other problems; so it's important to look after yourself; I'm off work with carpel tunnel at the moment, but I'm doing my best to stay upbeatKeep your spirits up everyone! Don't let it grind you down!

😘

[Alecinthesun]

Hi there,

You have been dealing with pain all your life so nothing has really changed. The diagnosis is just a label. I remember when I first got my diagnosis, it felt like a life sentence for pain; I am a young person, never been married and I don't have children so it was a harsh blow.

However, with or without the label, I was suffering. I was suffering because I didn't know how to properly manage my condition (I'm still learning by the way!), I couldn't explain to people why I couldn't do things and I struggled to get help from people and organisations. The diagnosis was the ticket to get the right medical help and to turn things around.

Use the potential diagnosis to get what you need. When you get what you need, the physical pain and suffering reduces. Turn the situation around, don't be scared of it, use it.

I hope things get easier, there are lots of lovely people on this forum that will help, but please remember, if you get the diagnosis nothing has really changed, at least with a diagnosis you will have the ticket to access help for many different things that you couldn't access before.