Hi everyone, I would like to introduce myself my name is Olly and I have just got a Fibromyalgia diagnosis.
I have tried to keep my chin up for the past few years. It started suddenly one day i was out walking with my husband planning to do a 5 mile hike when I suddenly was unable to carry on after only 100 yards. I felt very tired and my whole body was tender and painful. It was hard to explain to anyone how i felt, three weeks later i still was ill could barely get up before lunchtime, so I book an appointment at my surgery . Lots of blood test done but nothing showed up. I just about have every symptom on the Fibromyalgia checklist.
I think the worse thing of all was when my five year old twin granddaughter held my hand last week and asked me to run with her to catch up to her Granddad and her brother who had run on ahead. She said never mind Nana when you get better we will beat them! Bless her!
Anyway Does anyone live near me on the Isle of Man, I was hoping to join a local support group. Failing that would be very please to hear from anyone who would like to keep in touch exchange news stuff ideas about Fibromyalgia.
Thanks for listening Olly
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Hi olly and wecome to our little online community you will grow to love it here everyones lovely and we are all in the same boat sobwe can understand everything you are going through whether you ask questions or just want a chat we are all here day and night a lot of us suffer with lack of sleep . I cant help you with local support groups as im in the west midlands but someone else may be able to . Once again welcome we are all here for each other wishing you a pain free night XX
Hi stargirl, thank you so much for your reply. Its so good to be able to talk about the things that effect our lives on a daily basis that maybe other people who don't have fibromyalgia may not understand.
Thanks again for your kind message and warm welcome. Olly
Welcome Olly. I don't live near you but I'm sure you will find lots of advice, tips and support from this forum. I am new to the site myself and have had such kind thoughts and advice. Also one of the people as one if the members said there is always someone on here during the night as we all sleep so badly, nothing worse than the rest of the household, even the pets, are asleep you will always find a comforting ear here. I hope you have a peaceful night. Be kind to yourself. Dianne 😀X
Hi Dee, I have been overwhelmed by the support from the Fibro community, its full of useful advice and real empathy and understanding that only people with the condition can relate to.
You say about sleep I also suffer from Tinnitus which i know understand could be a symptom of Fibromyalgia , it affects my sleep pattern as well as the other symptoms of fibro. I do attend a clinic for tinnitus which has been a great help in helping me relax and trying to ignore the pounding in my ear.
thank you again for your support and great kindness.Olly
Hi Olly I suffer from tinnitus too. I see you are attending a clinic for this, have they offered you white noise hearing aids. They are so tiny they do not show as some other aids do and the white noise is to trick your brain to ignore the tinnitus and listen to the very soothing noise. I find if I wear them all day most nights I can get off to sleep, well for a couple hours anyway, without the tinnitus becoming too loud. I would ask your doctor if this is an option for you. Because they have a very small microphone it helps with hearing too, do you feel it affects your hearing as the tinnitus is so loud?
Hi Olly have just read your reply to jewel8888 that you are having a lung biopsy today. I'm sending you positive vibes and love and hope you get the best possible results. Thinking about you. Be kind to yourself. Dianne😀X
It was difficult for me when I WaS diagnosed it can be very overwhelming and I hate so many of us get this ugly painful syndrome. I am in US and would be delighted if you ever want to chat. I have a lung biopsy tomorrow so I will be extra tired next few days, but I'm always near my phone. This support group helps in amazing ways, you will find many friends here. Take care and make sure you get the rest you need.
Thanks so much. I'm tired and going to bed early, my appt is at 7 so I'm happy it will be over soon. I'll write in timeline when I'm able tomorrow. Your so Sweet, thanks for being so thoughtful .
Hi Jewel, Thank you so much for your kind reply, you are right when you say life has become more difficult, and for me the diagnosis has been a relief I know that properly sounds a bit odd, but when you feel so ill and some doctors give the impression sometimes that maybe they don't really understand how bad you are feeling, although I have found once I was referred to the Rheumatoid consultant this improved.
I wish you best wishes for your lung biopsy today and hope everything goes well for you.
Hi Olly, I am so happy you made some great friends on here. Thank you for your support as well for me today. I see where a msg got mixed up and I'm sorry if it got you a bit confused. The members here are so caring on here, and I've only started this group a short time ago myself. Have a great day, Julie 🐦
Hi Julie that's okay, I think we all get a bit muddled sometimes, i know i do, I think we all suffer from brain fog at sometime or other. I think this is my second message to you this morning,sorry, I like to answer all my emails in order that i received them in case i miss one. thank you again for your kind messages. Olly
Hi Jewel I had sent a message of good luck to Olly instead of you for your biopsy today. Please excuse my foggy brain. All my love and good vibes for a good outcome I will be thinking about you. 🍀🍀
Your message is so kind and appreciated. I'm home now, with my nose just burning a bit. It went smoothly although it was difficult to get the right vein for the anesthesia. I am thankful to now be able to rest and waiting to see what's causing my new problems. I hope your having a good day yourself.
So glad to here you are home and that your biopsies went well and is over and you are feeling as well as you can be expected to . I hope youchave a pain free sleep filled night xxx
Hello I'm so glad you are at home and resting now. Without a procedure a visit to hospital is tiring in itself. Maybe tiring enough to get some sleep tonight I hope. 😊 I feel your pain with the needles, I am so needle phobic, red hair means wobbly veins and numerous blood tests and canulas have left me with few veins that will play the game. I usually come home with bruising that last for weeks. I'm sure when they hear needle they go and hide. I especially hate the junior doctors who 'like a challenge' 😡😡😡. Not on me any more they get one chance and if they don't do it I ask for blood clinic staff. I'm keeping everything crossed for you that whatever is wrong can be put right quickly. I know there is no point saying don't worry as we always do but hope knowing we are thinking about you will help a little. Sending you love and positive thoughts.
Hi jewel8888, I'm pleased you are okay. sorry its taken me a long time to reply, I usually catch up on my e-mails when I can. I hope you hear soon what causing your new problems so they can be sorted out.
Hi welcome to this amazing supportive site - my symptoms are just like yours - I live quite far from you - Suffolk - but we all exchange ideas, helpful advice and support on here - Neese. x
Hi Neese, Thank you for your kind reply, you sound like you are suffering from the same symptoms as me. It doesn't matter how far away we live i just think talking about stuff helps us all get through the difficult days.
Anyway do keep in touch, Olly
Hi
I'm so sorry to hear that you are a sufferer.
I am afraid I don't know if there's anyone near you, I hope that someone does.
I am sure that if no one does you will find this site and the people on it are very kind, friendly and supportive. As everyone's in the same boat we try to help each other and are not judgemental. People post useful info, try to make us smile at least once in the day, support you or listen if you need to have a moan.
The mother page is helpful. I am sure you will be pleased that you joined the site.
Unfortunately fibro does take away parts of our old life, we just have to try to readjust and hope that one day there will be a break through in the research and come up with a cure. Then we can all go back to being active people, doing the things we love. Frustratingly, Until then we have to pace ourselves and just do what we can.
Hi Fibropop, Thank you so much for your advice and reply, I'm overwhelmed by the kind and support given so generously by the members of this site.
My life has change dramatically like so many other people on here that are suffering to get by on a daily basis. I can't remember feeling normal with no aches and pain anymore, just going out to Town for a quick shop now has its limitations. I found myself last week stuck unable to get back to my car, I had to rest for a while and then slowly and very painfully managed to get back, but i felt vulnerable exhausted and not sure what to do as my brain felt fuzzy, i know sounds daft doesn't it ?
I'm so pleased to hear that you've had some great support and are pleased you've joined the site. It does help you feel a bit better and not so alone.
It doesn't sound daft, most of us now can only do gentle walks or have to use sticks/wheelchairs and the brain fog is very frustrating and enl makes you feel like a fool and vunerable. Fibro changes your life and unfortunately we have no choice but to adapt. I can no longer go shopping, so my family do it or I go online.
Anyway, I hope that you continue to post and enjoy this site and feel a bit better. Take care.
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link to our mother site, FMA UK below:
Hi Ken, I'm so overwhelmed by the support via this site, thank you so much for your reply.
I feel so much better that the people on this site seem to have a much greater understanding of this condition and how it effects ones every day life, it makes such a difference to have someone to chat to about things.
Hi Blue52, thanks for your welcome, its strange when all this change to my life started over two years ago I thought i was alone, I was so wrong, and a prolonged diagnoses hasn't helped. The locum doctor at my surgery suggested Fibromyalgia two years ago, but consultant testing for other stuff which was all ruled out and now back to beginning, Ah well, that's life, Olly
You are not alone Hun we are all with you. I had similar probs one doc said yes another not sure. But I have a good GP now and all getting sorted . Hope you are ok today . Take care. X
Hi, I'm on the Isle of Man. Apart from a mental health issue which is not my issue here I've felt like I am cycling up a hill with a hangover for years. I have been diagnosed with vitamin d deficiency which might explain it but the vit d supplements are not helping. The co-codomol I take doesn't really do the job I need either. I've just read about fibromyalgia and have say 90% of the symptoms apart from tender points. Though I can feel stiff mainly in the morning. I can get out of bed and function but the constant second to second... year to year feeling of aching legs and all over , foggy headache hangover type feeling is a drag. Walking a few miles can feel like doing a stage of the Tour de France!
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