Fibromyalgia Diagnosis : Hi everyone! I... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibromyalgia Diagnosis

Wackojessi
Wackojessi

Hi everyone! I'm new here. Having recently been diagnosed at twenty after being sick for most of my life with many medical conditions, getting this diagnosis and reading up on the symptoms made so much sense for me but I am still struggling with understanding the condition and where I go from here. I understand that it is going to be a long process and have started going to physiotherapy( though I am not supposed to do any exercise yet) to a dietician and a few other services.

I was just hoping to see if anyone had any good information about pain management and the process following a diagnosis? Or if anyone just wanted to share your stories that would be really helpful x

12 Replies
oldestnewest

hi it took 2 years for me to be diagnosed it then takes forever to sink in 😥😥 lots of research and joining groups like this helps my best remedy is hot baths and hot showers in the morning to help you get going. this is a hard thing to get your head around the hardest thing I find is trying to explain to people what it is like dont think anyone knows what it is like unless you have it x

Wackojessi
Wackojessi in reply to AlfieG68

Thank you! I've never met anyone with this before so I'm hoping joining this group and hearing about everyone else experiences helps x

Hidden
Hidden

Welcome 🙏 I am sure that if you read some of the older posts you will get an idea of how this affects people in many different ways and how they try to deal with it. Great you have joined a great group of people who are very friendly and always ready to help. Take care and keep well. Xxx

Wackojessi
Wackojessi in reply to Hidden

Thank you so much!X

Hi and welcome to our friendly forum, you'll find lots of help and support here as we are all going through the same thing, there are lots of young members on here for you to chat to, as Alfie says hot baths /showers with Epsom salts in if possible help a lot as there's magnesium in it for muscle pain, I also use magnesium oil to rub in , I think acceptance is the hardest thing with fibro which is very difficult , but you'll get there with our help, look forward to reading your posts, just join in, take care

Wackojessi
Wackojessi in reply to Mydexter

Thank you! X

Hazel_Angelstar
Hazel_AngelstarAdministrator

Hi and a warm welcome to the community here you will find information, friendship, support and laughter too. You will find general information about fibromyalgia on our website fmauk.org and you can order a patient information pack at fmauk.org/resources

Hello & welcome, I think you will find us a friendly & helpful bunch! I was diagnosed a couple of years ago, thankfully fairly quickly, but still struggling to find the best approach to life & pain relief.

I was diagnosed with anxiety/ depression and insomnia about 2 and half years ago but my pain in my muscles and joints is becoming more severe. My voice is hoarse and I have Rhinitis. I keep going to the GP and they think I'm making it up. I've got all the symptoms. My thyroid has come back as normal. A new symptom for me now is pain in my toes and fingers and now persistent headaches. Co-codamol is the only medication that takes the edge off it. Also hot baths helps.

My best friend is my hot water bottle. Apart from all the lovely folk on here , of course. Best wishes. x

For me there was no ‘process ‘ after diagnosis.i think it depends who your gp is and whether they take it seriously. I know some don’t.....one gp I saw at an a and e department (about something else) told me Fibromyalgia is “ just a diagnosis of non diagnosis”

Other than drug after drug after drug, I have had no other help or advice . When I recently said I didn’t want to try anymore drugs my gp basiscally shrugged her shoulders.i asked to be referred for pain management , physio or to see a specialist but she refused . This has been going on probably 15 years.

So, I would suggest you try to help yourself as well as any help you can get from the medical profession. I find Epsom salts baths are helpful.i am now going to try magnesium in another form too (supplement)as it seems to be something many of us Fibro sufferers are deficient in.

You must try and keep yourself active.

Good luck I hope you get some help.

Hi Paddysdad, I agree there is no process. I was diagnosed many years ago by the standard pressure point test. The worst part of FM for me, apart from fatigue, was not just the pain everywhere but the frequent migraines that were disabling. They seemed to come from the neck which was stiff. Then when my work as a music teacher became less and less, until I was only working one evening a week plus private pupils, the migraines stopped! Since then there has been reactive pain but at least I wouldn't spend days in bed.

Two years ago I was diagnosed with OA in my knee. (so now I have something other people can understand). The pain was excruciating at the time and I didn't know what caused it. I still don't know if the pain was caused by "mild" OA. Now the OA pain has calmed down, I have severe pain in my back caused by me doing something I shouldn't have! Trouble is - I can't get over it as the injuries are recurring with the slightest wrong move and I'm on Naproxen, though I don't take it every day.

What I'm saying is that FM could get better, depending on how much stress you have in your life (whether you think your life is stressful or not) or on what kind of sleep you are getting or on hormones.

As for your GP refusing you any help such as physio or pain management. I don't think that is right. Perhaps the availability of these is geographical but I have had both in the last three years. Physio is self referral and I was offered pain clinic and had an assessment and then was offered many presentations and individual attention. I was even given a TENS machine, which doesn't work on everyone, but it did help me. I think if you haven't already done some pushing, you should look on line for physio help in your area and go and shout at your GP!

Sorry - I have only just found your posting. Maggie

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