accepting fibromyalgia

Hi Tanis,

I`m Linda, I am 56 and like you very often feel 90! What you wrote could just as well have been describing me I feel exactly the same as you. I`m quite convinced on a good day that there is nothing wrong with me and that I`m imagining it all. Then I set out to prove that I can do all the things I want to and just make matters worse. The fatigue washes over me and I just have to give up. I`ve been diagnosed for almost 2 yrs and I still haven`t really accepted that I have this dreadful condition!

Don`t give up, when you feel really down or are having a bad day, come on here and talk to us. we`re a very friendly bunch, I talk mostly to Tess and Ses. I found this forum in July when I was feeling very depressed and have found help and comfort on here ever since. We all suffer many different things with this condition and no two people are the same. I`ve found people that are very much worse than me and others who don`t seem to have as bad a time as I do. It doesn`t mean that any one of us is wrong its just the way it goes. Some people will have a flare up and when its over go back almost to their normal self, while others are never free from pain, stiffness, fatigue and a whole host of other things.

So don`t feel alone, we are all in the same boat, come on here and get to know us all. It`s made such a difference to me having people to chat to who understand.

Take care, talk again soon, Linda

Hi Tanis

I am Tess 52 years old and only been diagnosed since June this year. Although feel I have had this going on for about 7 or 8 years. Like Linda said we all have different levels of Fibro and all feel different amounts of pain. We all do have one thing in common though we can fully understand how this illness can make you feel. It is so hard for other people to understand when they can't see anything really physical the matter with you at times.

Do come on again and we all try and support each other! It does help and has helped me! In time you will find a way of coping and things will not seem so bad. As your doctor given you any support with medication or physio. I think when you can do something to help yourself if makes you feel so much better. I take 10mg of ampytripline that is an antidepressant that helps regulate the sleep pattern. Also was lucky enough to get to see a physio on the nhs and he gave me some exercises to do. I also have OA so some of the exercises are for that as well as fibro. Just doing that helps as I feel I have some support.

Take care and do come on again soon.! You can also come on under the other heading with all our names. You will then meet everyone else at some point when they come on the site.

Love Tess x x

Hi There Tanis,

Im Lindy, 42 and new to the block also...

I haven`t had a diagnosis. Had blood tests galore which have came back negative. But have the symptoms of fibromyalgia. This has been going on about a year now. Aches and pains which get progressively worse as the day goes on, tiredness beyond belief, disrupted sleep patterns (usually wake up coz of the pain in my shoulders. Like everyone else...I could go on and on .

Docs blaming my aches and pains on my fat belly... :lol: (if you read the post called Apparently)

Its an awful thing when u know ur not \"rite\", but professionals don`t seem to take u seriously. The tiredness itself can be quite debilitating coz u just can`t muster up the energy to do anything. I seem to have it lucky, compared to some of the ladies on here. Humbling actually.

So Im plodding on, and hanging around this \"hood\"...coz I like it... :D

Take Care

Lindy..x

HI Tanis,

To diagnose Fibromyalgia you have had to be in pain for more than three months, no blood test shows it present but all these do is rule out other causes of pain!!! and as Skye says so called professionals do not often take you seriously as it still classed as \"all in your head to some medical individuals\" and as Linda says[quote:2433eedd46] Don`t give up, when you feel really down or are having a bad day, come on here and talk to us. we`re a very friendly bunch, I talk mostly to Tess and Ses. I found this forum in July when I was feeling very depressed and have found help and comfort on here ever since. We all suffer many different things with this condition and no two people are the same. I`ve found people that are very much worse than me and others who don`t seem to have as bad a time as I do. It doesn`t mean that any one of us is wrong its just the way it goes. Some people will have a flare up and when its over go back almost to their normal self, while others are never free from pain, stiffness, fatigue and a whole host of other things. [/quote:2433eedd46] she has it all in a nut shell :oops:

Tess and Linda, Di and many others we are all very supportive and understand the torment this illness can cause....... PUKE helped me through the beginning and after 9 months I got my diagnosis after feeling I was banging my head against the wall!!!!! This condition moves around and as I am a Support Group Organiser many of my Ladies have different severities as two ladies seem to have severe migraines where as another lady and myself is effected physically through mobility and two days may not be the same as one day you can have pain in your big toe and then another day it is in your shoulder........ and there is other ailments like irritable bowel it goes on and on. As I often say to others write a diary as this may help your diagnosis xxx

I hope everyone is having a good day and gentle hugs to you all (even a hug can hurt too :roll: )

Hi Tanis its Di here..i also have just been properly diagnosed only when i saw the rhymatoligist.. people on here help me so much they are all lovely people and dont deserve to have this awful illness.. i suffer from constant pain everyday ( for 3 months now not had a good day at all) i suffer from severe fatigue and also depression.. you mention about people not understanding we all know how that feels i was just saying i have lost 3 friends i thought were good friend they just dont want to understand.. about 5 months ago i was given a crutch to use to help my back pain and its amazing how people then treat u different as u have a aid showing that there is something wrong with u.. im still at the stage where i have not come to terms with this and wake up (in agony) in the morning hoping it isnt to bad to be able to make me feel normal for a day.. keep ur chin up. ses,linda, tess and all the lovely other people will help u with anything u want to talk about..

hugs di xx

Hi there everyone,

For new members on this forum Patient Uk has updated information on our awful illness ....

https://patient.info/showdoc/27000172/

Hope everyone is feeling ok xxxx

Hi Tanis & Everyone!

How are we all today! I have headache lingering and aches, pains in my knees and ankles!

It is a good idea like Ses said Tanis to keep a diary and write down each day how you feel and aches and pains you have. I was lucky didn't have to show my gp anything like that he did all the bloods to rule out other conditions and referred me to see Rheum. Had to wait 3 months. The rheum I saw was very understanding and did the pressure points and I had only 11 out of 18. I don't know why if you had all 18 they haven't diagnosed you with Fibro! :roll: He gave me a steriod injection and if it worked was not fibro and Osteo. The injection didn't do any good but it prooved to them that it was Fibro! :lol: I still keep a diary now and write down everyday how I am feeling, what hurts and also how many times I have done my exercises lol, also what pain relief and other tablets have taken for it. I like to do it as it is something I can look back on and see if any improvement being made or getting worse. :cry: Also I can see that it isn't all in my head lol : :roll:

How are you Helen & Jules haven't heard from you both for a while!

Take care everyone!

Love Tess x x

Hi there Tess and everyone,

I have had quite a good day today ...... the first time in about a month :oops: I have canceled my lung capacity test though until Friday as I have no-one to go with so my daughter will be coming with me then as I do not like going far on my own and hopefully her results will be back from her x-ray, as they were not back still????? I think our results were late getting back due to us changing doctors recently :oops:

Nice to hear you had an understanding Rhuematologist Tess as like I had said previously the one I saw was not understanding....... you said about steroids well when I saw the Rhuemo I explained my Doctor put me on Prednisolone and it was the best I had felt in years she was annoyed that my doctor had put me on these but he thought I had Polymyalgia and she said no way I had that as my SED RATE was not raised enough 35 and I was too young and she said anyone can react to these as your body can make serotonin so she did not believe these were any use to me......... I have mentioned other events, but it does make me think what you said about steroids shouldn't relieve fibro??? I was dancing around the living room for a week and then when I came off them I was back to square one??? but the Pain specialist says I have 18/18 tender points and diagnosed the Fibromyalgia........ so I am confused?????

Anyway I have changed doctors so I may get more answers who knows???

I do hope everyone is ok xxxxx sweet dreams xxxxxx

Hi Ses & Everyone!

You are probably right the long delay with results could be because you have changed doctors. I do hope you get on ok on Friday and at long last get your daughter's results. How is she now?

It is so confusing with all the different information rheumatologists and doctors give us. No wonder we can't understand what is going on! :cry: The trouble is there are so many different illnesses with a lot of the same symptoms: Some doctors once they have ruled out all the other things won't believe there is still something going on. Especially if all the blood tests come back normal.

Well I ache today with pains in ankles, knees and big toe. Never had a very good sleep. Think my pains in ankles, knees and toe is more to the Oa than the fibro at the moment with the wet damp weather.

We have rain here today again a miserable wet day!

Well hope everyone else is doing ok! :lol:

Love Tess x x

Hi everyone

Sorry i have not been on for a while but my dad has just had his second hip replacement so I have been busy going back and forwards seeing him.

I went to my gp on monday and mentioned about restless sleep and she has given me anatriptoline which when I red the leaflet is used to treat depression. I do not really want to take anti depressants but she thinks it will help the back pain. Still no closer to seeing anyone but yesterday my arms were so sore and heavy and really painfull even to the touch. My muscles seemed really tight is anyone elso suffering this ? It is horrible being in pain all the time and with all the tablets my husband says that if they shake me I would rattle!!!!!!!!!

Hope everyone is coping okay and not too stressed with the pain and aches and yet I say christmas around the corner.

all my love and hugs

Helenxxxx

Hi Helen

Good to hear from you! i hope your Dad is getting on ok. Have you heard anymore about the lump on your foot. I take 10mg ampytripline and feels it does help with my pain. It is an antidepressant and is only a low dose so doesn't really work for depression at such a low dose. It has been given to you to help work with pain and regulate your sleep pattern.

I have been on it for about three or four months now and have no serious side effects. Think only thing i can think of is probably a dry mouth overnight so keep some water next to my bed. Other than that can't think of anything else. There is a stigma with antidepressants but if it helps your fibro possibly worth a try :lol:

Are you still waiting to see Rheumatologist. I saw mine for second time last week and have been discharged from hospital now. Once you have a diagnosis and they see you are coping ok they discharge you. The steriod injection I had that didn't work prooved that it was Fibro and not due to Arthritis. :cry:

Hope you hear something soon and good to know you are ok as you can be lol :lol:

Take care

Love Tess

Hi there everyone x well, what a night I had once again :oops: got to sleep at 5ish and then got woke up 7.15am so rather tired as you may say :oops: The aches and pains are generally in the hips and knee so been a bit fed up of it again I say it is the OA as You Tess x nightmare hey? :roll: and yet it has been fairly mild for three days or so with no rain so ok from here and this is a first for this neck of the woods :roll:

So nice to hear you are ok Helen x, I hope your dad is recovering ok, and I hope your getting all the help looking after your dad too as you will tire your self out too if your not careful xxxx Yeah and how is your lump on your foot, again I do hope you are not waiting too long for relief xxx I do hope Amitrypitline works for you as it didn't for me :cry: these are to help you relax, and they did help me for a short while :? Your husband says you if you shake you would rattle same here :cry: and my cupboard is looks like a Pharmacy :P

I do hope everyone gets a good night sleep xxxxx take care everyone and keep smiling.......... I have finished my presents for xmas :lol: so relieved

Luv and hugs xxxxx

Hi Ses & Everyone!

You have done well Ses to get all your xmas presents bought! :lol: I have made a start and got two. Did make a Christmas Cake this week lol! :lol: I have Molly's birthday to buy for on 6th December and she will be five. She is into High School Musical :lol: We did buy her a High School Musical quilt cover set as a present when Sophie was born. It is difficult with her birthday being in December and Christmas to know what to get her. :roll: Last year we brought her a dress for Christmas and a game for her birthday. :lol:

It is a really dark dull miserable day here. It is not cold just looks like it could rain again or snow. :cry:

Well I didn't sleep to well again overnnight. It was my own fault eating tea to late before bed. Went to see my dad and was going early afternoon. Then Stewart had to collect his mum from hospital so didn't get to my dads until about 4. By the time we got home was getting on 6.30 so didn't eat until just after then. Things didn't go as planned yesterday with Stewart's first day off. Going to have my hair done later at 1pm but the hairdresser comes out to me lol. That will make me feel better :lol:

Well hope everyone else is not suffering too much with the pain.

Keep smiling :lol:

Love Tess x x

Hi di ses and everyone

Have not heard anything about my foot yet am waiting for an ultrasound on it to find out what exactly the lump is and what it is attatched to. it is now a healthy 3cm x 3cm but they say that it could be anything between 2 to 10 weeks wait for the ultrasound then I have to go back and see my surgeon to see what he says. Still have not heard from my back specilist but have an appointment for the orthapedic surgical appliance unit to check out my sexy orthapedic boots and to make something to stop my toes going over each other, that is on the 10th dec. So am playing a waiting game with the nhs !!!!!! like we all are.

Aching and pain has been real bad lately so relying more and more on my painkillers which do not elimate the pain but just make it more bareable. The worst pain is in my back and hips just trying to get comfortable is a feat in its self.

My dad is doing well thanks you for asking b ut it is going to be a long haul for him as this is his second hip that he has had done, and being a farmer it is not like he can get away from his work as he lives on his job so my mum has had to take over the farming duties but she says that she has never felt so fit with all the exersise lol!!!!

I want to ask anyone do they use crutches to get around. I have a pair that my surgeon told me to keep and use if I need them but have not had to yet but with the pain in my foot from previous surgeries getting worse and my hip and back might just have to or does anyone think that I might make the condition worse by not using all my muscles.

Any way glad to here you are all nearly organised for christmas have not done anything myself yet. At presant the thought of 13 people for xmas dinner again is a bit daunting but will have to get organised soon have not even got any pressies.

Speak to you all soon

Love and hugs

Helenx

Hi, Tess, Ses and everyone,

Not a good day today! Not that bad myself just the usual tiredness and aches and pains!

Finally got hubby to the GP today about his eyesight. After checking several things, none of which he could manage, he said things had definitely got worse and referred him back to the eye clinic at Addenbrookes. He made the appointment there and then in the surgery on the computer. I think this must be something new, has anyone else had their hospital appointment made in the GP surgery?Seems a good thing. Makes a change for somethiong positive from the nhs! Saves all that waiting for an appointment to come through.

Have to go back for him to check his chest as chest infection he`s had since the spring is still a bother. GP didn`t have time to deal with all our problems in one go so asked if we could make another appointment! He`ll be so fed up with us both soon! Lol

Well Ses, how do you manage it? I`ve bought a few cards and some chocolates and that`s it! You put me to shame, especially with how much pain you are in etc. When I was working I was much more organised, but keep putting it off this year.

Have you got your daughter`s results yet? when we have x-rays at addenbrookes they either give us a letter to take back to GP or fax the results through, so they are there the next Day. Chatting on here to all of you it just shows up how different things are done in different areas. It`s all the nhs so you would think they would have the same system for the routine sorts of things. Its this kind of thing that upsets people when they think other people are getting better service than they are.

Well hope everyone is not sufferring too mcuh today, very damp and dismal here.

Love Linda