Hello, after months of visiting my doctors surgery with various ailments and consultant appointments with different depts in the local hospital I have been told I have Fibromyalgia...I actually told the doctor that I loved him as I felt a great relief that my symptoms which are very real are down to a real condition. I also have been told by ENT I have several things accuring that may need an operation though not yet sure if there is a link.
I have several other medical conditions...bowel problems and Bladder,Migraine, High BP, Breathing difficulties..Astma and Carpel Tunnel in both wrists and I am also about to spend a night in a sleep clinic to confirm Sleep Apnea. I have never had so much wrong with me as in the last 2 years or so....I'm only 46 and feel like an old lady, I have also turned very grey in a short space of time and my periods are all but given up even though blood tests show I am not even pre menopausal...Infact all my blood tests are normal other than my Vitamin D levels.
I work in catering though this is becoming a real effort as I start work in the afternoon and I am shattered by then due to my disturbed night with choking episodes.
I have been asked to go and take in my diagnosis and decide what treatment I would like..I'm not keen on taking Amotriptoline however would like to hear from others how things have gone for them.
Hello Mumof5 (really - how do you cope??????????????????)
Welcome to the site
It is a relief to get a diagnosis isn't it? fibro is a pretty strange condition - please feel free to have a moan if you need to - we understand what you are going through because there is always someone in a similar situation or with relevent experiences.
A few of the medical conditions you mention are associated with Fibro eg bowel and bladder problems and carpel tunnel ( I had that in both my pregnancies - utter agony).
I'm just managing my aches and pains with ibrprofen and cocodomal at the moment, I have CFS/ME as well so I need lots of rest and sleep. I try to pace myself by taking loads of rest between activity ... but then I go and do something really mad like go to a concert - hopefully the Bay City Rollers in Solihull on Wednesday .... I know it will put me to sleep until I see David Essex later this month, then there is David Cassidy in November, Donny and Marie in January and the Osmonds in the spring!!!!!!!!!!!! I never said I was sane did I?
Thanks so much for your reply...I will have to add more later as I have to limit typing...I feel very welcome x
Hello and welcome Mumof5! (I had to read the mum of 5 bit twice, my goodness, you are a saint too lol!)
So good to have you with us! You are amongst friends here, we are all in the same boat so we all understand.
Take a look around the Questions, Blogs and Tags, there is a wealth of information, support, advice, friendship and personal experiences too! Anything you are worried about or not sure of, please let us know, we are only too happy to help you wherever we can.
It is all a bit of a minefield isn't it this Fibromyalgia condition - hopefully you will gain a lot of comfort being here with us all at FibroAction. Most of us have
been through all the emotions, symptoms and hurdles in our lives with Fibro, so there is always someone around who can relate to what you are messaging. The members are great to jump in and start posting about their own experiences in relation to yours and the Volunteer and Admin Teams are always on hand to help out where we can, offer a shoulder to lean on and hopefully a helping hand too along the way to point you in the right direction or to look up info and advice for you.
We all overdo it at times and knock ourselves backwards, so we know about that too! We have good days and bad days and many of us have learnt Pacing Therapy which is a great way of managing our pain, fatigue and at the same time gaining more energy through learning when to rest in between activities. We also know about flare-ups and how to deal with them, so we can cover most things here!
I hope that tells you a little about what happens here at FibroAction - we have light hearted posts, serious posts and there's always something to chat about too!
I really hope you enjoy your time with us and please let us know if there's anything we can do to help you.
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Thanks for the reply, I have adding some info about me to my profile...feeling very welcome here x
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That's so good to hear Mumof5, we want all our members to feel safe, welcome and comfortable here.
Hi there am 43 and know how feel i have a few things too and i work for myself now turned Employer (hard work) only way to keep going lol
You do feel like your moaning constantly back n forth , various hospitals etc .
Its one thing after another i am under a brain specialist he is to help me cope with symptoms apparently although i not been back been too busy . I am sure they think can help you off meds.
I had Amitryptiline but was taken off i then had Neurontin made me ill. I take Lyrica ( life saver) especially for me and with wrk. You have to persist though is my advice .
Although i creeping up the doses it starts at 25mg and goes to 600mg at minute i on 300mg but feeling an up dose again as gets stronger in my opinion.
My life turned over nite from a Hernia op in 2010 and 2 yr 5 mnth later am applying a blue badge, Esa, DLA as never knew i could with running my own business and am financially struggling paying staff now as i hoped i could get back to it , just thought temporary phase in my life. Unfortunately its not!!
So try Amitryptiline as that is used for different reasons and can wrk for some .. Low dose start probably then build up cxxx
Hi there am 43 and know how feel i have a few things too and i work for myself now turned Employer (hard work) only way to keep going lol
You do feel like your moaning constantly back n forth , various hospitals etc .
Its one thing after another i am under a brain specialist he is to help me cope with symptoms apparently although i not been back been too busy . I am sure they think can help you off meds.
I had Amitryptiline but was taken off i then had Neurontin made me ill. I take Lyrica ( life saver) especially for me and with wrk. You have to persist though is my advice .
Although i creeping up the doses it starts at 25mg and goes to 600mg at minute i on 300mg but feeling an up dose again as gets stronger in my opinion.
My life turned over nite from a Hernia op in 2010 and 2 yr 5 mnth later am applying a blue badge, Esa, DLA as never knew i could with running my own business and am financially struggling paying staff now as i hoped i could get back to it , just thought temporary phase in my life. Unfortunately its not!!
So try Amitryptiline as that is used for different reasons and can wrk for some .. Low dose start probably then build up cxxx
Hi and welcome.... I have never tried amaptyriptaline but did try seroxat and fluoxetine ... Very weird symptoms... Was finally tried on dosulepin one of the really old cheap antidepressants ... Works like it says on the tin errm box.. I get a nights sleep with my 0.5 mg of clonezapam have put on about a stone in weight but it's levelled out there... As I get a nights sleep that's the most important thing to me... I tr to manage the day with wheat bags, paracetamol, tried many otherpain medsincluding morphine just don't help and give me strange side effects.. Hot shower every morning eases out night knots and kinks and I am lucky I have 3 monthly trigger point injections in my shoulders and neck... Off for those next Saturday... Guess what I am trying to say and rambling on and on is now you have a diagnosis keep on going to the gps etc till ou find the meds that suit. To get the pest possible pain relief
Hi & welcome. I too have a whole host of health issues including breathing probs, fm, 3 types arthritis, fatigue, skin, thyroid, adrenals, alopecia, neuro, etc. etc. I'm sure you get the picture.
I found this site in May and the people on here are so lovely and supoortive. Usually find people are about 24/7 so if you cant sleep or have particularly hard time or just bored/fed up, this is a good place to come. Lots of information, + a bit of a giggle from time to time.
My breathing issues have been scary and I thought I would die to be honest...I'm taking singlar to relieve the problems at night...I could end up with a throat op though not rushing for that....more info in my profile x
Took a peek @ your profile. (feel free to do likewise). Life can be so tough and it has to leave it's mark somehow. Seems to me you're the lynchpin for a large (& i'm sure loving) family & with all the benefits also comes pretty hard work, especially when 2 offspring have special needs of any kind. Respect! Still there must come a time when you need to look out for yourself, & I would say you've clearly reached that point. I love my (small but amazing) family, and I think guilt is my biggest problem when it comes to asking for help. I suppose in motherhood it's part of the job description. My youngest daughter has just (23 Sept) given birth to 2nd son, and I just love being Nana. I get to do all the fun stuff! Eldest grandson is aged 5, and is very patient when Nana gets stuck etc. (lol) :).
There is life after scary times like that. I now use an oxygen concentrator which although is somewhat restrictive, i'm just glad to still be here. I use portable canisters/mobility scooter so I do get out now, which is a huge improvement trust me. I think you have the right mindset, never hesitate to ask help from nearest/dearest, I would also add that I have been amazed by the kindness of strangers - weather premitting i stick a smile on my face and just go for it. I know I look to be quite a sight but I've given up caring (i'm only 50) and I refuse to sit in a chair for the rest of my life! Some days are tougher than others, but on the whole, I do ok. I wish you all the very best and I hope they can sort things out for you. I understand you have probs. with your hands, so dont worry if you cant reply. Take care.
Hypercondriac................No 'T'
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Thanks...I have read that perfectionists seem to suffer from more pain...Thanks for the welcome!
Hello Gnome - please don't comment on peoples' spellings, it really doesn't matter here. We are all here to help each other and things like that are inconsequential. Also we have members from around the World here who speak different languages and therefore spelling can be very difficult. It is imperative that all members feel they can communicate safely here without being pulled up on how they write, we want everyone to feel comfortable and safe. We are here to help and support not stand in judgement. I hope this clarifies this matter.
Please note that the FibroAction.HU community Guidelines clearly state that criticising someone's spelling is not permitted. We appreciate your co-operation, many thanks. The relevant guideline is posted below for your reference -
"6. Criticism of spelling, punctuation and/or wording of messages will not be tolerated. We have members from around the world, many of whom are affected by Fibro. If you don’t understand a message, just ask the sender to clarify it."
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Hello LibertyZ
It wasn't a criticism or anything like that, just purely showing how a word is spelt correctly. I thought I was being helpful and not being judgemental in any way, hence no comment with my spelling correction, just the correct spelling!
Where do I criticise?
Guideline 6 is, in my eyes, stoopid. Iv we just rite things as wee think thay shud bee den things will only deeteeriorate. (do you get my point?) Being able to spell is one neccessity to enable people to communicate with each other using a written language.
If as you say "things like that are inconsequential" then I'm sure there are English teachers all over the world who will vociferously argue that you are very, very wrong.
I think that you are being inconsequential by bringing this matter up in the first place!
Good to see it has been changed now.
My question is this........Why change it if it is "inconsequential"?
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And I'm not trying to get into an argument with anyone here either. (before anyone says that!)
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Gnome, we have Rules and Guidelines to ensure that our members are protected and are respected. Misspelling a word is inconsequential and bringing attention to this in a public forum is not acceptable. If you think our Rules and Guidelines are stupid, that is your prerogative and your choice as to whether or not you come into our forum.
People are very ill who come into our forum and they need to be reassured that they can communicate without fear of people being overly critical. Admin did not change the spelling, we were more than happy with it to remain, I assume Mumof5 edited her post, but there was no need for her to do so. Perhaps she felt under pressure because of the criticism - criticism is a sensitive issue.
We welcome comments on all threads and blogs but will take action when Rules and Guidelines are broken as on this occasion.
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To be completely honest this doesn't even need a reply because as I have already stated:
A. I have not CRITICISED anyone
B. I will NOT be dictated to by what I can only describe as a power hungry fool with a title.
Grow up and get with the program. Ffs.
Please go and throw your weight around somewhere else. What happened to "We are all here to help each other"? Another power hungry fool!
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Please be careful Gnome because you are on the brink of breaking more Rules and Guidelines with this post. Please adhere to our Rules regarding criticising, respecting everyone in the forum including Admin, and your language. Calling people names isn't nice either. No-one is dictating anything, we are simply making you aware of a breach regarding our Rules which we are compelled to do.
We are always here to help everyone and to protect them too.
We would appreciate your co-operation. Thank you.
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Please explain WHERE I have called anyone names?
No one is dictating anything? Lol. (read this back to yourself!)
My language? (what?)
May I suggest an English useage class, I think you may learn something.
Above your station? YES. Throwing your weight around unnecessarily? YES. Think about what you are doing? DEFINITELY.
Grow up and stop now. Please do not take your pain out on me, or anyone else please! Transferring your pain like this is very wrong.
I me Amitrip & have just gone up to 60mgs and it certainly makes a difference to my nights sleep on top of the other meds I take (co-codamol, tramadol, thyroxine, calcichew, folic acid & now iron supplement) & finally Diazepam ... Yup I'm a fully-fledged member of the human maraca brigade lol... I'm waiting for a confirmation of a diagnosis & my go is considering trying me on gabapentin... So sending luv n hugs & hope you get the care you need too
Thanks for the reply....I think I had seen every doctor in my surgery and I even thought about moving in however the decor isn't my taste! I sleep about 2-3 hours a night if I'm lucky so anything that helps this is a bonus.
I know how you feel to have a diagnosis. I got mine some 20 years ago and I am afraid I have not yet come to terms with it, basically because it varies from day to day, from not so bad to completely unbearable, but I have been able to accept it. And I am sure many on here feel the same way. In the beginning I thought I was going mad. But of late I seem to be having more problems which I initially think are fibro related and then turn out not to be.I wish you well in any treatment you do try. I had Amitriptyline in the past and for a good while it worked well. Then it stopped working. I am now trying them again but as yet I am not feeling any benefit from them. Only time will tell. My GP will NOT give me poain killers as I have stomach and duodenal ulcers as well as IBS, stomach scarring, intestinal adhesions, hiatus hernia and esophagul scarring, and the pain killers could cause further problems. So I think I am better in pain than bleeding to death internally. Again good luck in anything you try and let us know how you get on xxxxx
Hi thanks for the reply...Pain killers are an issue here too as I suffer from Astma as well as diverticular disease...Just taking co comadol atm and it does help for a short while. My Job has me in agony later in the day and I know I need to get a new job to suit but no luck at the minute.....
Oh blimey... I used husbands htc phone for my earlier reply and its changed some words lol... meant to say "I use Amitrip" and "my gp not my go"... lol I know just what you mean regarding surgery decor!!! the automatic doors at our surgery would keep me awake and the bing-bong everytime a patient gets called in wakes me up too! lol I've taken an extra Diazepam today as my back is giving me jip and the ibs has made an appearance too... on top of that a brother rang to tell me that eldest brothers throat cancer has returned and he is back in hospital too with pancreatitis.... sounds like its a waiting game now :(...
On the upside a parcel of craft goodies has arrived only wish my hands would work properly so i could craft!
I wish I could do some of the things I have in the past...I struggle to sew and knit these days and have to pick my moment with anything....school uniform adjustments had to be guestimated as I needed to start them in plenty of time x
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I think you've hit the nail on the head there Mumof5, everything takes so much more thinking about doesn't it, more planning, more effort. I find the trouble with thinking so much is that it's so exhausting! I need a rest after thinking!
Thank heavens for adjustable waists these days lol... I've taken up crochet again but after an evening crocheting and a few hours chatting on forums... well, my hands just about relax around 2pm... then it all starts again
I completely agree, where would we be without them! I love the new WOW jeans, they are still very fashionable but with stretch denim and slightly elasticated waists, but they don't look like the traditional elasticated waist types of old. I can also wear nice boots with them and feel trendy which helps me feel better and smarter. I don't want to feel like a frump when I'm still youngish (says she with tongue in cheek lol!) Wow also do black, brown, red etc trousers too which is great! I have 36" long legs and they also cater for taller girls too!
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Forgot to say, I want to start to learn to crochet LLL but haven't a clue where to start, any suggestions! I thought it would be a relaxing way to chill out and to make sure I sit down and rest as I am terrible for overdoing it and then paying for it later! I have to consciously pace myself, learning to crochet would be a great way for me to do this.
My mum tried to teach me as a girl and she would start me off with a little square which I somehow always, without fail, turn into a ball!! lol I eventually picked up a hook and ball of wool and found some instructions and watched videos on youtube.... my mother in law gave me a booklet called Twilleys book of instant crochet, this is available on amazon grab yourself a bamboo crochet hook size 4...(you can get a set of these on ebay for a good price that should last a life time) get a box for them tho and keep them safe.... (I speak from experience here as only last week I sat on my bed and heard a crunch and realised I'd leant on my work and snapped my hook...so I've ordered myself a replacement ) Anyway... as for wool I like Calico by Sirdar.(It comes in lots of colours) follow the instructions in this book and make a row of about 5 stitches, I did this and joined them and worked round and round and made myself a wool bag in about a week (i did knit the long handles tho)... some wool shops have crafty sessions where you can learn to crochet/knit or maybe they can give you some info/advice. message me if you want to know which seller i used on ebay and where I get my wool/yarn from. You could of course use a standard metal hook but the bamboo ones are a lot kinder to fibro hands iykwim and the longer you hold them they warm up in your hands and you get a more fluid action. Good luck and let me know how you get on
Ooh just a thought... American crochet is slightly different from British! If memory serves... what we would call a double crochet they call a triple and so on, like I said tho if you can find someone to show/teach you as you go it will help you so much more than watching youtube vids, A lady who crochets has a blog does such brilliant work and is so inspiring let me know if you want her blog addy
Yes please LLL, that would be great, thanks so much for all the info, you're a gem! I'm from the UK by the way, so I'd better make sure I don't get confused or all Fibro Foggy lol!
Watch this space Julie! Thanks to LLL, I have ordered all my bits and pieces ready to start! Hope it's not too hard for left handers lol! Julie, I might be bugging you too for advice so run and hide while you still can lol!
I googled "free crochet patterns", and got going, I like doing baby clothes as they are done in a few hours - I have infinite patience with people ... but precious little patience with craft projects!
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only wish my hands would work properly so i could craft! 
grab yourself a bamboo crochet hook size 4...(you can get a set of these on ebay for a good price that should last a life time) get a box for them tho and keep them safe.... (I speak from experience here as only last week I sat on my bed and heard a crunch and realised I'd leant on my work and snapped my hook...so I've ordered myself a replacement ) Anyway... as for wool I like Calico by Sirdar.(It comes in lots of colours) follow the instructions in this book and make a row of about 5 stitches, I did this and joined them and worked round and round and made myself a wool bag in about a week (i did knit the long handles tho)... some wool shops have crafty sessions where you can learn to crochet/knit or maybe they can give you some info/advice. message me if you want to know which seller i used on ebay and where I get my wool/yarn from. You could of course use a standard metal hook but the bamboo ones are a lot kinder to fibro hands iykwim and the longer you hold them they warm up in your hands and you get a more fluid action. Good luck and let me know how you get on 
what a fool i have been!!!!!!!!!
Just had a second opinion from a new rheumatologist which had not worked well. 
Severe pain and hypertension
