Hi, I have just joined and am grateful for any help and support you all might be able to give me! I really don't have a diagnosis and am currently going through various tests including blood tests. What I'm experiencing seems to fit the details on Fibromyalgia as set out on the UK NHS website. I don't know how well I'll get on with my GP yet or whether or not I have got Fibromyalgia or a closely related issue. The two things I'm most interested in are what I can do for myself and advice on health (exercise and diet for eg).
My symptoms have certainly made me sympathetic to fellow sufferers - its definitely not much fun!
Looking forward to hearing from members, best regards
Hi. Welcome to the forum. I hope you get some answers soon. It can be very difficult to get a diagnosis. It took me years unfortunately.
With regards to how you can help yourself, my best tips would be:
- keep regular sleep patterns and make sure you get enough sleep (I need at least 9 hrs a night or I’m useless)
- keep stress to a minimum
- try yoga - there’s a YouTube channel called Yoga for Fibromyalgia and it’s great
Those are the things that help me the most. I’m sure you’ll get lots of other advice here too.
Good luck!
Roo x
in reply to
Thanks so much. I’ll look at the YouTube channel. Regular sleep is a bigger challenge as my wife has weird shift patterns! I definitely would love better sleep!!!
Hi rockgo, welcomeI know it can be scary when you don't know what is happening or what to do, however, I would say the first thing is don't panic. Take a deep breath sit down and let yourself calm down. Right now the best help I personally can give you is, you know your own body better than anybody else. You know what hurts, what feels right, what feels wrong, You need to find a way of feeling in control. I kept a daily record (still do) of everything I did daily, what I ate, drank and even how many times I used the loo. I was diagnosed in 2005 with an underactive thyroid which caused some of my lethargy, I was diagnosed with IBS in 2007 which accounted for some other symptoms Then after a lot of tooing and froing with GP and consultants I was diagnosed with Fibro which they all agreed after looking at my notes should have been done in 2005 at the same time as my thyroid. I seem to be writing an essay so I will stop for now. The last thing I will say is don't be afraid to ask, the people on here are like a second family and are here to help and receive help.
Thanks Bacaloca. It feels good to know that people care. It also feels lonely when you know there’s a problem but don’t know for sure what it is! I’m probably too hard on myself, you know that “pull yourself together “ thing that makes it worse rather than better. Now I’m having discussions here I realise my issues are real thanks everyone for your support x
I’ll reply properly over the weekend (I’m feeling a bit rubbish today) but this is a good place to start looking at self care measures: fibroguide.med.umich.edu/pa...
Hope you get some clearer answers soon, it can be hard getting to that point. I had a couple of years of every type of test then in frustration a drew a picture of a gingerbread man figure (I cant draw!) and labelled it with everything on my body going wrong, took that to my doctor who could then see fibro straight away. (She has been my GP for 20+ years and is v good) On self care I would just say pace yourself, something I still struggle with ! Its so easy to overdo things on a good day. If I could fix my sleep thats the magic wand I would want as even with a routine I dont reach deep sleep, but good sleep routines do help tho it seems that may be tricky for you. Take a nap in the day if you need to. Exercise helps, but take it slowly. Look after yourself where you can, you will get support and virtual hugs on here xxx
What a great idea! I was thinking of taking a print out of the NHS page on fibromyalgia to my GP with highlighting on all the things that relate to me but maybe your idea would be easier and clearer. Thanks so much especially the encouragement to pace myself and just allow myself to stop and have a nap. I had a really bad day yesterday and feel better today so I will take your advice and be gentle to myself!
Hi Rockgo. Welcome and I hope you get answers soon from the drs. It can be a long and frustrating time attending various appointments. I was 2-3 years before I received my diagnosis. In terms of diet, plenty of fresh fruit and vegetables. Lots of water. Add lemon to it as it has natural anti inflammatories. Learn to pace yourself even on your good days. Yoga for fibro is excellent too but don’t push it too much on the exercises. Go to where your body can go to that doesn’t cause pain. Cut down on caffeine. I had started Bowen Therapy before lockdown and felt my body seem to benefit from it. Good luck and hope you get answers soon x
Hi rockgo and welcome to this lovely group full of great people who are going through years of same things ❤️ I remember when I was going through all sorts of tests and started with blood tests, then referred to rheumatology, having ruled out gout, arthritis, and other illnesses with scans and blood tests left with no answers was scary as not many doctors still are familiar with fibromyalgia, but got there in the end!? Saying that even though was diagnosed about 6 years ago I still struggle with every day pain as the painkillers work differently on everybody but at the same time don’t really work 😭 … they usually take the edge of pain, tried all sorts of combinations of tramadol, Gabapentine, antidepressants, etc with some awful side effects but like I said even though everyone is in same boat with fibromyalgia there is different things what can help ❤️ As you on the start of your journey with this horrible invisible illness, keep going but slowly, be kind to yourself and yes most of days I need afternoon naps which is sometimes frustrating too but if your body needs it then have the nap ❤️ … hope you get your answers soon and wishing you best of luck too with everyone on here ❤️
Hello Rockgo. There are pluses and minuses to fibro. It’s a nasty painful unpredictable condition - but you do meet some lovely fellow sufferers on here.
I’m sorry I can’t help with advice on medication (my body totally refuses to go that route). But I would suggest you investigate diet/supplementation/pacing/stretching. They have all helped me. There are lots of experts on here to give advice. Not professionals - just people who have found a way through the Fibro maze and are willing to pass on their tips.
So - sorry you have joined this club nobody wanted to join. But try to stay positive and read the posts. There is a lot you can do to help yourself.
Yep I know, I have just recently started to moan on here, if you look at the previous post there are lots of different but similar way to deal with the F-word. basically its all about finding what is right for you, this involves the right diet, avoiding things that put a stress on your system like booze, tea and coffee (though I can get away with small amounts to tea and coffee , too much and all hell breaks loose),gentle exercise and getting the medication right. You need to be a bit strong with the medical people as they an be dismissive since they know more about what is wrong with you than you do or nothing at all.There are lots of people on here that seems to have sensible approaches, but like everywhere you might meet the odd snake oil peddler but the moderators seem weed them out pretty quick.
Other than seeing what other people get up to, I mean in a respectable way, stick around. It certainly has done me some good.
lol. I feel like that sometimes! I especially feel your advice about being a bit strong with the medical people my wife often tells me I am too soft and don’t say how I’m really feeling. I’ve found one GP at my practice that does listen to me, sadly she is a locum so isn’t always there. Being gentle is also good advice as I tend to do everything full throttle and I can’t do that anymore. The losses for me are not being able to rock climb, go hill and mountain walking, going camping etc. Just a short trip into town tires me out and often I’m unable to cope with that. I do have a little workshop at home and,as long as I do small sessions I am happy making things. Telling myself it’s ok to stop and rest is hard as I’m so used to getting the job done and that takes so much longer now. The folks on here are lovely and I’m really grateful for your support. I don’t feel so bad about things knowing that I can talk here and people understand what I’m going through. Thanks to you all x
Welcome! Many have given helpful advice ready, I would like to add that symptoms for fibromyalgia are highly variable in characteristics and severity. They come and go so don't assume you won't feel great again (at that time, try to protect the good phases as much as possible and prevent a flare). Pay attention to your symptom triggers, some people avoid caffeine whereas I cannot work properly without caffeine. The key is to become best friends with yourself again to find what supports your physical and mental well-being best. You can find the renewed purpose of yourself even if some of the old hobbies must be parked for a little while. We are so much more than just the sum of our achievements! Hang in there and I hope you feel better soon!
Thanks again for your support. All this is new to me inasmuch as I had no idea previously what was going on. I can see now this will be a whole new learning curve. I’m waiting for the results of an ultrasound to reach my GP and then I can make an appointment and discuss these issues. I am much better informed now about my health issues so hopefully I will get some help!
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