Welcome to the Fibromyalgia Action UK... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Welcome to the Fibromyalgia Action UK Community!

Mdaisy profile image
67 Replies

Welcome, to this FMAUK. HealthUnlocked (HU) community which members report to be both supportive & informative but most of all a friendly, caring atmosphere to share experiences of Fibromyalgia. :)

Our Community Administrators try their very best to keep the community atmosphere a respectful, non-judgemental place to talk freely and ask you to help with moderating the community by clicking the 'Report of Abuse' button if you see anything that is against any of the guidelines.

Here's an article where HU describe 'How to report content' to HU & the Community Administrators;

support.healthunlocked.com/...

Being a large community with over 33k members we do ask you abide by the guidelines set out in this FAQ link below, as we do wish you ALL have a good experience using FibroAction HU Community;

healthunlocked.com/fibroact...

Please find a direct link to our community guidelines here : sh.fmauk.org/FMA-HU-Rules

The role of the Community Administrator is outlined here by HU;

support.healthunlocked.com/...

We are on hand should you need to ask us any questions or ask for help to address any problems you may have (or we will signpost you to the help you need). If you are wondering about a content of a post/question you would like to post concerning links to websites/blogs and if allowed please do not hesitate to contact us before posting.

Please find this link below about Privacy as HU is considered an 'open' community, so it is important to read how to make posts as private as possible if you wish to;

healthunlocked.com/fibromya...

Apologies in advance for the wealth of information in this one post, please note this welcome message can be found in Useful Info for future reference.

To find out more Fibromyalgia Action UK and our Community Administrators, please see the following links;

healthunlocked.com/fibroact...

For now, why not write a short post introducing yourself to the community please don't feel like you need to say much - maybe how long you've had Fibro, any symptoms you really struggle with and a general 'Hello' will be fine.

Don't be shy - the community is a very welcoming friendly environment ! :)

With best wishes - the Fibromyalgia Action UK - HU team :)

fmauk.org/

E: head.office@fmauk.org

Find us on Facebook @ukfibro & Twitter @fmauk

P.S - Here's how to do Emojis here on HealthUnlocked:

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Mdaisy

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0224 profile image
0224

Hi,

I have had Fibro for at least two years that I know of , that is when I was dxs anyway. I also just had my third back surgery , fell last night for the second time in two weeks. I stupidly didn't have my brace on last night though so I am in a lot of pain. I also have OA a blood disorder, failed fusion in my neck, knee problems . I'm in pt rt now just started and EVERYTIME I go I have a fibro flair up. My back surgeon said my surgery would make my fibro worse which it has. I am so horribly tired during the day, I do try to do some things on good days but that also takes me down. I have a horrible pain management doctor, he really does nothing to help me. He was going to lower my pain meds and my surgeon asked him to not to do that yet since I was starting PT to call him if he wanted to talk to him. He tried to call but he was in surgery, so I went back to my surgeon for my first fall , and we talked about that they tried calling him but he was busy. So they refuted me to someone else . So I called the doc office explained that my surgeon referred me to them and prob should have said why but I did so I think I was just hunting down meds they took info from me like what was wrong with me and what meds I took would have a doc see if they could help me, called back said they couldn't don't see how you can make a judgement like that if not seeing the patient!!! Gave me three other docs to call and all they do is injections! Not the help I need. I really don't know what to do!

Any suggestions would be great thank you

Poppetts profile image
Poppetts in reply to 0224

Hi ya my names Debbie and iv been where you are since my back op 4 years ago iv been left with chronic lower back pain it's awful...for the past 2 years iv be telling doctors I have fibromyalgia just kept saying its cause if your back.....so on Thursday I saw a at hospital he said I'm defo suffering from fibromyalgia....why does this stop you from sleeping just don't get that part hope your ok be nice to chat one day take Debbie and dogies xxx

Tracey1163 profile image
Tracey1163 in reply to Poppetts

Hi Debbie. I too have had back trouble for years. I had a spinal fusion in 2000. That broke down in 2009 the bone graft wore away. Next fusion same place but with rods & screws in 2012. That pain went but I still got chronic back pain. Pain meds Dr told me it's nerve damage from the op. Might go might not? It's worse than before the fusion but coz of all of this I got depressed lost my job coz I couldn't walk very far or stand for long I was a pharmacy technician. Dr said all of the above brought on fibromyalgia. My GP doesn't recognise it so I have to go to see another Dr in the practice who does recognise it if I think my problem is fibro related..

On Morphine capsules Sr. 90mg. Nortriptyline 20mg. Levothyroxine 50mcg. Sertralinetc 100mg. Diazepam 5mg as & wen.

Cbear profile image
Cbear in reply to Tracey1163

Hi tracey1163. Thought I'd introduce myself as your post caught my attention. I had a spinal op in 1999 aged 28 to straighten spine with two metal rods and screws and a thoracotomy for two prolapsed discs. It turned my life upside down and the pain I'd been complaining about which was the fibro (not diagnosed then) became a million times worse. after two years of living in agony I had all the metal removed but still felt terrible. I had a third op by different surgeon,. But by then I was told I had severe fibromyalgia and that I should never of had extensive spinal surgery. I lost my job and had lots of other health problems. I was very fortunate to have a loving husband and I had a son who is now 13 and the apple of my eye. o accepted a long time ago that unfortunately I can't turn back the clock, but I'll always regret having those awful operations. It was such a shame that I didn't get a diagnosis of fm all those years ago as looking back it started in my teens.

Conmaster profile image
Conmaster in reply to 0224

I so get this . This degrading and insensitive treatment of us that need our pain meds needs to be addressed. I am so tired of it.

gemmamc87 profile image
gemmamc87

Hi I'm new to the forum and newly diagnosed with fibromyalgia x I'm also a single mum with two young boys both asd'ers with ocd and adhd, I'm having a lot of 'bad days' over the last 2 months and would love to hear some of your coping strategies x

Mindfog profile image
Mindfog in reply to gemmamc87

Hot baths and reduced stress. Make sure your bed is right for you. A propper nights sleep works wonders . I am male by the way. Lots of males don't tell their doctor enough info . I was diognosed last year . After suffering for 5 yrs with fibro pain. 😃

BonnieSue profile image
BonnieSue in reply to gemmamc87

Hi gemmamc87,

Your post caught my eye because you have 2 boys with ocd and adhd. I had 3 with adhd and I know what a challenge they are! And on top of that you have fibro and are a single Mom, 2 more big challenges! I don't understand what "asd" means, though.

For the Fibro there's a drug called Savella, at least there is in the US, that helps. My neurologist also prescribes soma/carisoprodol, a muscle relaxer which helps with the muscle knots, burning and general misery from tight muscles. Both are expensive, so insurance is a help. De-stressing your life is extremely helpful, but you know how hard that can be with your young ones. The trick is to concern yourself with the high priority issues and let the lower priority things go. Not easy to actually do, just easy for me to say.

We can talk more if you want to. Maybe more easily in private messages. You're in for a long haul with the young ones and the fibro, too. Although I can say mine has come under much greater control with letting go of the perfectionist tendencies I very much had and destressing in my life by letting these tendencies go quite a bit. Take care of yourself and best wishes.

jimarj profile image
jimarj in reply to BonnieSue

Hi, ASD is Autism spectrum disorder i suspect as I have teenage twin boys with it. I have also just been diagnosed with Fibromyalgia about 4 or 5 months ago

Ltals profile image
Ltals in reply to gemmamc87

Hi There,

I'm also a new mum and recently diagnosed with Fubromyalgia. Unfortunately I still haven't found a way to manage my pain other than taking pain killers, so I'm sorry I can't offer any advice. But I was wondering when you Fibromyalgia started? It started to affect me two weeks after giving birth, and as you have two children wondered if it was he same for you.

I hope we find some relief from this horrible condition.

YoungandSuffering profile image
YoungandSuffering in reply to Ltals

Hi, just seen your message and I too have fibromyalgia as a result of the trauma when I had my second child. My rheumatologist says that I have had low level fibro since then & it took a respiratory infection to make it full blown. Have you looked at whether your hospital runs a 8 week rehab course for fibro sufferers? Are you under a pain consultant?

Conmaster profile image
Conmaster in reply to gemmamc87

I was taking Amytriptiline and it really helped Only had to take a half of 25 every two days to take the edge off my pain. I advise when prescribed drugs, ask if you can personally adjust your dose. Sometimes the drugs are just to strong in the beginning. A lot of them make me gain weight to so less is better for me

Paula19702122 profile image
Paula19702122 in reply to Conmaster

How are you doing with Amytriptiline. Does this help with your pain ?

Nel1961 profile image
Nel1961 in reply to gemmamc87

Hey I am new to the group, am feeling really illat the moment and finding it hard to use the tools I have been show.....but reading post is really helping me. Try and relax( easier said than done! ) I use mindfulness there are apps, , just 10 mins a day will help be patient it time a while to feel the benefits.

Lol just read this was post 4 years ago...I hope you and your boys are doing ok,

Nel

Mindfog profile image
Mindfog

Hi i am on pregamblin for my fibro but its not helping . Any ideas i should suggest to my doc?

Thanks Dale

Paul23051974 profile image
Paul23051974 in reply to Mindfog

I am on 100 mg MST tablets morning and night they help with my pain but do not take the pain away fully. And they do nothing for the dizziness I suffer from. Hope that helps.

debbiedean profile image
debbiedean in reply to Mindfog

Hi Dale I've just been prescribed pregamblin yesterday and I took my first one last night .it made me feel very floaty and relaxed drugged up ..not sure this is a good thing though in the long run..

Nursemaz profile image
Nursemaz in reply to debbiedean

Hi I am Maz just joined this forum I have just been diagnosed with fibrosis and thing gave me prevailing 50mcg twice daily I took first one Thursday night and next day felt like I had been drugged with something unlawful. I could hardly stand had to hold on to door frames was seeing double had pains in my chest and ended up with disorders and that was taking just one tablet. I do not want to take them but my family day I should. Did you have the same as me or has anyone else taken these and does these awful side affects go .

Thanks

Nursemaz profile image
Nursemaz in reply to Nursemaz

Sorry the message is meant to say pregabalin

Puglett58 profile image
Puglett58

Hi I have just joined the site I have Fibro and have had it for a few years on a range of pain killers I still go to work but struggle at times but will not give into this pain stubborn I guess. Would love any advice or to chat with others who have this

Take care all

theregenerator profile image
theregenerator in reply to Puglett58

Hi Puglett58, I'm 41 and I've just been diagnosed with Fibro but have had muscular skeletal pain all over which started in my teens, and neuropathic pain since 2002. I was able to manage to hold down a job for 24years and care for my daughter (who suffers with Ehlers Danlos Syndrome types 1 &3) as a single parent, with a combination of rest, exercise, medication (although I never continued with any type and found I was unable to tolerate most which was prescribed to me, other than ibuprofen and nortriptyline. The point I wish to make is, that after reading only 3 posts, I think we are very hard on ourselves, it is not admittance of a weakness within to realise we need help and support from each other and the wider community when we all obviously have been very unlucky to find ourselves with Fibro and all the difficulties it brings.

I said I managed for 24 years, I did until the fatigue side of things kicked in, to which, whether you wish to submit or not, is simply no choice you can make, that is taken away from you by the condition. Pain is one thing, you can still move with pain to a degree but once the fatigue gets you, you have to wait it out and rest is the only that's worked for me. I've had almost 6 months of work since Aug 2015, I tried to go back to work when I thought I was ready but was unable to get my hours up and struggled to completed the easiest of tasks and my stubbornness to accept things, just made things worse. I felt so frustrated as I had been doing everything that was previously recommended to me and have no explanation (as I'm sure most of you) as to why this has been triggered.

Puglett58, do you get fatigue as part of your symptoms?

Poppetts profile image
Poppetts in reply to theregenerator

Yes u get fatigue hate just can't do any thing just don't understand thus illness. Hooe to cigar soon x

Poppetts profile image
Poppetts in reply to Puglett58

I will have a chat with you some time Debbie

Smallypaully profile image
Smallypaully

Hi everybody! I am a newbie. Was diagnosed with Fibro in March but it has taken many years to get this diagnosis. Meds are still in trial and error phase sadly, so I am in pain most days and nights and my sleep pattern is completely up the wall. Other than that I am hunky dory lol! Look forward to finding out even more about the F word from you all - am now off to have nose around (don't think sleep will be visiting any time soon!). Hope to speak to you again soon x

Froglette profile image
Froglette in reply to Smallypaully

Hi will be pleased to chat with you, sometimes I feel like I'll go mad with all that fibro does to your body & also the side- effects of the meds x

TexasTyrant profile image
TexasTyrant

Thank you for the warm welcome. I am a 49 years old woman and I have been experiencing awful hot flashes where my head, neck, upper back and face begin to sweat profoundly out of no where. My feet and sometimes my hands, are always cold though. I had my hormones checked and they were within normal range. I am constantly irritable, unmotivated, and find it real hard to get inspired about my daily routines. I was diagnosed with depression after my hysterectomy (ovaries intact) and I have taken the prescribed medication for years. This medication keeps me out of the abyss of a rabbit hole, but jumping for joy..., I think not. I am just perplexed constantly trying to figure out what is wrong with me without being viewed as a hypochondriac. This is not how I choose to feel. I would much rather be vibrant, joyful, and energetic. Any feedback would be greatly appreciated.

widdershins profile image
widdershins in reply to TexasTyrant

Hey there. It was so refreshing for me to read your post. I have fibromyalgia, amongst other things, diagnosed 10 years ago. I have exactly the same problem that you have with the hot flashes, neck, ears, face and profuse sweating. I have always been very hot blooded, but now my hands and my feet are like blocks of ice, even when wearing gloves! Crazy! I am away to my GP today to ask about this as it is getting worse. Will let you know of any results! Keep smiling.☺ and thank you.

Debco45 profile image
Debco45 in reply to TexasTyrant

Hi I'm Debbie and I felt like reading ur story that I was reading mine and i totally understand all your pain, and agony and I'm here for you and I'm not great at advice, but I had to realize for myself that no matter what I have to fight this and some days are so hard to even get out of bed and honestly I still have days I can't function but I'm a 44 yr young woman with 3 beautiful granddaughters, so I have to do this and you got this

You deserve happiness and anytime if you need support, I'm here

lindarose010463 profile image
lindarose010463 in reply to TexasTyrant

Hi....its really tough. Fibro is awful it robs you of your life. Stay strong

N0602 profile image
N0602 in reply to TexasTyrant

Have you had your B12 levels checked? Your symptoms sound much like mine. I have Pernicious Anemia (difference between B12 deficiency and PA is with PA you can't absorb B12 due to a missing enzyme called Instruct Factor.

Good Luck!!

Nan

Drawde profile image
Drawde

Hi, I have had fibromyalgia for about ten years, maybe longer.Symptoms much worse this last year. Have just started having itchy scalp,ears and neck, any advice gratefully received, also suffer intermittently from breathlessness, so far undiagnosed, again keen to hear experience from others. Thanks

Footygirl profile image
Footygirl in reply to Drawde

Snap on the itchiness Drawde. And the ear one is ssooo annoying. Damp cotton buds help there for me though I am, of course, very careful not to push them in too far. Oh the relif from cool damp cotton. Mad, it sounds. Why have I turned into Yoda? Ha. More madness.

By the way guys, as a newly diagnose sufferer, who do you see for this? What speciality does it come under please? A rheumy rxd me.

Thanks guys

⚽️

Callierae profile image
Callierae

Hiya, I've had chronic pain in my legs,ankles, hips and knuckles for a year now .been told I have Fibromyalgia but I'm not convinced as I swell really bad around my ankles and my legs. I was given gabapentin and due to being on 12 a day 300mg I've gained about a stone and I'm totally scunnerd.

Mahoney0719 profile image
Mahoney0719

Hi all my name is Linda I am a mum of 4 like the rest of you I have M.E / fibromyalgia / chronic back pain for 5 years now. It's really hard day to day to cope with the pain I am on buprenorphine patch 20mg/ hour Tapentadol 200mg two times a day lidocaine plaster 3 a day nurofen 250mg 3 times a day. But the doctors are slowly taking me off the lot as they are not helping me at all so no point taking tablets that don't work and the side effects of the buprenorphine / Tapentadol are really bad I can't speak probley and I am sick all the time the room just spins around ( I live in bed )

Thanks Linda xx

pipsicola profile image
pipsicola

Hi everyone! !

I'm 39 y.o. with 2x beautiful children.  I've suffered from many illnesses and diseases now for many many years!!!

My life has just got worse and worse. 

No family  members understand what I go through!! They just think I'm being lazy!! And want to spend time in bed!!!

I absolutely hate my life. I don't know who I am anymore.  I really don't! !!

 I look in the mirror and I don't see me anymore. I see this over weight  lady with constant chronic pain everywhere. Who's depressed. Who at 36yrs had a super public cathator put in via surgery!!! And I still have to wear a leg bag due to it not draining properly!!!!

My life is full of problems.  One after the other!! Every day in fact!!!

 I wish I could remember the old Pip?!!!!

I use to like her. Very different to who this Pip is!! She had confidence.  Strength. Everything going for her. This Pip has nothing. I just want to hide away in the cupboard and not let anyone see me.

I'm overweight. I've tried every diet. Healthy eating everything but nothing works!!! I'm at a dead end! ! Please please please help guys. I must loose weight before summer so I can get out with my kids xx please help me anyone. I'm so depressed. Help me!!!!

Xxx thank u for yr  time xxxx

BonnieSue profile image
BonnieSue in reply to pipsicola

Hi pipsicola,

I can understand much of where you've been. It stinks doesn't it? Each health problem makes it all worse and conflicts with another one's meds and they all keep you overweight and it's hard to exercise or diet and the problems go on and on. Has weight loss surgery come to your country yet? Covered by insurance because you're significantly overweight and it's an issue of shortening your life span? You may want to check this out. I had no idea it was available until my endocrinologist suggested it and now I did it and am down 42 lbs. in 3 months and feeling so much better. Off or decreased some drugs, too. 

You know how this would make you feel so much better about weight that you couldn't help gaining in the 1st place. Add to that getting off and reducing some drugs. Some health problems like blood pressure improving. I'm no longer "morbidly obese"...at least I think I'm out of that woods. I have some strict rules to live by but I went into this knowing what they were. This is better to be healthy.

I beat fibro on my own---by de-stressing my life. I refused to keep a perfect house and life anymore. I learned to let some things go and relax more. I let only high priority things get done and relooked at how I classified things into priorities. As a perfectionist, I had to change quite a bit but the release from fibro pain was worth it. I don't need pain meds. What a miracle to be able to say that!! I'm all "natural"!!!

I hear your cry for help and I hope something I've said will be helpful or maybe you have a question for me. I've been through a lot of pain and misery including many of your experiences and just maybe I might be of help somewhere. I'm sending you a great BIG (((((HUG)))))) to let you know that someone cares about you!!!

lindarose010463 profile image
lindarose010463 in reply to pipsicola

please talk more ...lets see if we can help you

FionaS2016 profile image
FionaS2016

Hi all I'm 29 years old and diagnosed with fibromyalgia last year after suffering chronic pain along with other symptoms for 5 years. Currently taking painkillers to manage it which sometimes helps and other times it does not. There are many things that cause extra pain including carrying bags, too much bending and twisting , sitting too long etc. I have tried every avenue I can through NHS and just try to manage this condition the best I can. Would be really interested in others point of view on this and what they think is the best way forward with this disability. 

nettes profile image
nettes

Hi my name is Jeanette.I'm 57,I have a wonderful husband and a 28 year old daughter who is getting married next year.

I have been in pain for30 year's after 4 road traffic accidents.

I was diagnosed with Fibromyalgia late last year but I believe I have had it for 10 years.I also have TN.

I take Tramadol,Gabapentin,Amitriptyline,Prozac and few other things.

I really have problems with my meds. Combined with my fibromyalgia fog I can't function properly.

Mz_Mary profile image
Mz_Mary in reply to nettes

I can relate to all of that Jeanette.

~Hope, Peace & Love, From Mz.Mary~

Brightlightess profile image
Brightlightess

Hi, I've just joined this group, I've recently been diagnosed with Fibro, although I think ive probably had it for a couple of years now, I haven't been given much help from my doctor other than being told pain relief will help and maybe anti depressants, so if anyone has any advice on what I can do please, i have all the common symptoms.. Kasey

Debco45 profile image
Debco45

Hi my name is Debbie, Thank you for inviting me to this amazing support group.

I was diagnosed with fibromyalgia 4 yrs ago and wow chronic pain is absolutely NO JOKE!!

Plus, my family doesn't understand it and feels this is in my head so to have support and understanding is awesome!

I was on Lyrica, 2 yrs I took it faithfully, but honestly it wasnt helping, so I was in bed 3 to 4 days a week just suffering, but I realized I had to fight this head on everyday and so I do

I wish all of you comfort and support and I'm so blessed to have found this support group🤗

Haby profile image
Haby

Hi, my name is hazel and I was diagnosed with fibromyalgia 2 years ago. I have found it hard to accept my illness going from a person who worked in a physical job and enjoyed going dancing and to exercise classes 4 times a week to someone who struggles to work (in same job, I'm self employed) 2 part days a week, no classes and rarely goes out. Missing my old life is hard. I struggle with pacing as a resuIt I have many bad days. I have pain in most joints but mainly hands, wrist, ankles, feet and back. I also have very lax ligaments which my podiatrist said was why I have unstable joints which sprain easily. I am waiting to be re- referred to rheumatologist to confirm this. Thank you for welcoming me to your community x

siouxiebloo profile image
siouxiebloo

Hi everyone, my names siouxiebloo (pronounced susie blue) It was my daughter who hooked me up with this link as i'd like to have contact with others in the same boat as myself! I'm 50 & have been diagnosed with fibro since I was 37. After attending an Orthopedic surgeon for Osteoarthritis, Disc degeneration, Spinal stenosis & Scoliosis, I was referred to a Rheumatologist as they thought I might have Rheumatoid arthritis & it was she who diagnosed me with Fibromyalgia... It was a little known subject & most Drs ( as there are still now!) didn't/don't acknowledge it's existence! I was handed a leaflet & sent on my merry way to muddle my way through the Fibro fog, which I'm still doing to this day! Thank you for welcoming me into this Community & I hope I can give as well as receive support from you all!

Thanks

Mommasfancypants profile image
Mommasfancypants

Hi. I am a 38 mother of 3 girls (8, 11, 13 going on 25!). I was Dx in 2010 after becoming mysteriously sick (like getting the flu over night) and 4 months of poking, prodding, and my dr finally putting all of the pieces together. Apparently I am a posterchild for FMS. I was also Dx with chronic fatigue. I had to resign from my teaching career, my marriage ended, and now I'm living back in my home state. I have tried so many things I can't remember them. None of the "fibro" meds helped. Actually did more harm than good. I was Dx with narcolepsy last year after many years of tests. So I'm a Narco with Fibro. Apparently I'm a rare case according to my doctor. I like to think I'm medically interesting but...

I joined the group because I'm looking for other people who really know how hard life is with fibro. I don't know any other 30 year olds with it, Nevermind Narcolepsy! Hoping to find support, support others by sharing my knowledge about treatments and methods, and maybe gain some insight on how to lessen my symptoms.

Thanks!

Fearthefibro profile image
Fearthefibro in reply to Mommasfancypants

I am 38 years old also... I have just been recently dx with fibro.. I feel your pain with the fibro. Some days I just feel I cant deal with the pain anymore. But somehow I find the strenghth. The meds I take ease the pain very little and they make me feel drunk all the time.. im currntly in college to be a certified medical assistant. I worry I wont be able to do the job once I graduate. But I will continue on anyway.

Sco2016 profile image
Sco2016

Thankyou so much for the info. I've had fibromyalgia for about 15 years and been on amitriptyline for that time. My main concern is the odd feeling I have in one side of my head, it's a heaviness, a fullness not pain.

Fearthefibro profile image
Fearthefibro

Im new to this site and also to fibro.. the ain in my hips and legs become unbearable most days.. I do not have much if any pain in my upper body. Is that normal for fibro patients.. I am current on Cymbalta and gabapentin. The meds make me feel drunk. Is that normal? Also at times the pain in my hips and legs is so intense after shopping (walking) that I have to use the electric scooter the stores supply. Which is very humiliating if I see someone I know.

nightmare1 profile image
nightmare1

Hi I was diagnosed with fibromyalgia four years ago and as i can see we seem to all suffer in silence and not know where to turn to chat to others that understand us and feel listen to .My whole life has to work around the pain and tiredness i go through thankyou for being here

Alli-Mia profile image
Alli-Mia

Hi my name is Alli...I have had fibromyalgia for 16 years and have lived in the Boom/bust cycle for some years, my fibro symptoms have progressively got worse and am now seeing a psychologist who is helping me try to structure my days. I have "pushed through" life up until now and have found it difficult to accept that I need to change my way of life so drastically to try & get to some kind of normality. I have joined this site to try & get some tips on how to manage this.

angiesmith50 profile image
angiesmith50 in reply to Alli-Mia

Hi Alli-Mia welcome to or lovely group.

Sorry you have fibro. I think you have tagged on to an old message.

Anyway, I understand your pain and frustration. It took me a long time to accept that I wasn't the same person anymore.

Are you taking any meds for the pain?

We all understand what your going through so come and chat or have a rant or just ask questions we are always here.

Good luck and take care

Angie xx

nightmare1 profile image
nightmare1

Hi

I was diagnosed 3 years ago and coming to terms its hard I've worked all my life and to be told I'm not capable pulled me down im trying to loose some weight now and making the most of the nicer days to get out a bit more i suffer with fibro fog and it has hit my confidence forgetting my credit card number when doing shopping having hot sweats as well has been very embarrassing like when I turn up to the hairdressers to be told im sweating and they would need to wash my hair twice also an appointment at the bank the poor guy wondered what was wrong with me i don't mind it in my own house but not when I'm out also ibs problems can catch you out outside but I think I've been letting the illness take me over for long enough i think you have to come to terms with it all and live with it

angiesmith50 profile image
angiesmith50 in reply to nightmare1

Hi nightmare1 welcome to our lovely group.

You will find us welcoming and supportive.

Sorry you have fibro and yes it is very hard to accept your not the person you used to be.

I also have bad fibro fog and today I've messed up twice with something. 😠😠😠

Come and chat, ask questions or have a rant, we are always here.

Good luck and take care.

Angie xx

ukgospeldiva profile image
ukgospeldiva in reply to nightmare1

Yo ho ho and a bottle of oramorph!

I was diagnosed with FM 9 years ago after an RTA caused by a policeman driving his car into me and sending me straight into oncoming traffic! I was told that the area of the spine called the 'dorsal horn' had been damaged due to RTA and that was sending wrong signals up the spinal chord. Where do I begin? I was seen at the local hospital who said I had whip lash and take paracetamol when they should have called for an ambulance and not sent me home! I was in agony. I've since had a shed load of cortisone injections in my shoulders ect.as after the initial RTA I then spent the next 13 months in sleepless agony as my neck bowed out (spondylodis), trapped nerves in my hands from the neck damage and both my shoulders were eaten away with arthritis. I was eventually seen by my first rhumetologist. I started having diahorrea episodes about 18 months after RTA and GP see the me to have a camera investigation that and back negative. IBS was diagnosed.i have episodes of this and bladder issues that last for weeks/months at a time where I am a prisoner chained to toilet. I hate the exhaustion. One occasion I went 15 times in a single day. I took loperimide ect but it did nothing on that occasion. I'm allergic to both gabbapentin and pregabalin as it gave me a red facial rash, made my hair fall out and made me aggressive? Eventually some 5 years later I was seen by a nurse at a pain clinic who couldn't understand why my GP hadn't put me on MST Morphine as everything else failed to give any pain relief? 10 years after the RTA I have just been diagnosed with Lupus, which I believe began because of the accident 10 years ago. I have had several hiddious flare ups where from the get go, my hands were red,burning on fire and that fire spread fast through the entire body. I could not stand even the slightest pressure. I was bed bound the first time with a flare for 3 weeks. I'm just comming out of a now diagnosed combined Lupus/FM flare that I've had for 7 weeks brought on by a virus. Yes the sweats, the temperature spikes, the inability to sleep as the Lupus and fibromyalgia attacked my wrists,shoulders,spine,knees, ankels,feet, elbows, soft tissue such as muscle, tendons, ligaments and the arthritis in my knees,hands and wrists, the tendonitis in the ham strings that went from the Achilles heel straight into the buttocks causing sciatica, my neck also played up.

Yes the extreme tiredness because you can't put your legs down flat in bed, the pain is off the river scale,your on a shed load of pain killers that don't work,your destabalized swollen knees clicking and cracking with every tiny movement,your hands clawed,your wrists swollen and feel broken,your skin turns red and blotchy as your hair is falling out in hand full's....and then you shush yourself on the way to the lavvie?

It's a great life if you don't weaken LOL

Teanna profile image
Teanna

Hi all,

My doctors call me the complexed patient. I have many issues including APS, Under active Thyroid, RSD (Chronic pain). Lumber facet joint diease, osteoporosis, Arthritis, many more plus loads of allergies. (All this started with being pregnant with my 3rd child, after him I lost a few babies in the first trimester, (although was still painfull, physically and mentally). I'm also wheelchair bound.

My first problem arose when I had prolapsed discs in the lumber area, from there I have never been well. I had DVTs, PEs, TIAs and so on. My dad had DVTs, his brother. My mother has CIPD, Lupus, myself, daughter and my brother has under active Thyroid. My other daughter has fibromyalgia. My daughter seems to think that I may have it. I suffer from painful joints, especially after sitting in my wheelchair after a couple of hours, if I'm lucky and go out shopping, the next day I'm in absolute agony, my hands and fingers are all crippled and distorted, my legs/feet are so swollen, I'm fatigue, incoherent, this can last up for a few days, the more things I try and do, the more pain I'm in. (My 2 end fingers and thumb are so painful and continually have pins and needles up to the elbows).

The doctors send me from pillow to post, I'm on so much medication, I do try not to take all of them. I'm lucky that I have got a good GP, but not in everything i have.

Any help would be helpful

Kind regards

Tina

TheAuthor profile image
TheAuthor in reply to Teanna

Hi Teanna

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 for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of all of your suffering and struggling, and I would talk about the possibilities of having Fibro with your GP or medical specialist, as they will need to undertake medical testing to rule out other medical conditions from the equation prior to a diagnosis.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

jgeddes profile image
jgeddes

hi thanks had pain in legs and feet for 4 years doctor gave me amitriptelene 50mg lyrica 100mg and cocodamol 500 30mg still pain most days waiting to see a orthodontic surgeon to hear his views

Tracey1163 profile image
Tracey1163

Hi everyone. I joined this group & the underactive thyroid group on here today. I am 53, I got diagnosed with fibro nearly 3yrs ago. I wasn't shocked as I was getting symptoms the same as a friend. I was already on Morphine capsules for pain relief(for another problem) & so they masked a lot of aching. Long story short...... I'm now on Pregabalin which have helped. But now I keep getting hot flushes where I end up wringing wet & dripping. I've heard this can be the fibro thermometer gone wrong? Anyone else heard of that??

Avm43 profile image
Avm43

Thank you, nice to know I'm not alone 😊 !

Tracey1234567 profile image
Tracey1234567

I have been on pregerlin for over a year and they make me really tied I am on a low dose but they still make me sleep I am also on dicafinic, can anyone give me advice on what to do about me sleeping so much

cherryripe21 profile image
cherryripe21

How do you unsubscribe?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to cherryripe21

you unfollow the coommunity

Gjkas profile image
Gjkas

Hello Mdaisy, I was diagnosed with Fibromyalgia 10 years ago, was in hospital for 6 weeks before diagnosis. Just couldn't understand why there was so much pain in my body, then the Neurologist came and told my Husband and myself what it was. We had never even heard of it before. Now 10 years on and the pain is even worse. It's affected so many other parts of my body. I just don't want to be here anymore. Do anyone else feel like i do. I haven't been out of the house for about 7 years except to go to the hospital or Doctor's. My Husband does all the housework, shopping ,cooking, looks after me. Just feel so worthless.I have so many other medical problems that i feel like I have just had enough. I know i am feeling sorry for myself, but it's just how I feel.I don't know what else to say except that I hope all you lovely people out there don't feel as bad as i do. Goodnight and Godbless everyone. Gjkas xx.

Mdaisy profile image
Mdaisy in reply to Gjkas

Welcome to the community....I am sincerely sorry you feel the way you do at the moment. x We all here support each other through the ups and downs of chronic illness, so you've landed in the right place for support, advice and information from the charity website fmauk.org. I would suggest you consider introducing yourself to the whole community, by posting an introduction post as this way you'll benefit from all the members replies who contribute regularly to the site. Don't be shy ...we are all very welcoming and you might find members suggest ways they cope with flares and periods of low mood. Hope this helps Emma :)

Gjkas profile image
Gjkas in reply to Mdaisy

Mdaisy, I don't know, I'm just so fed up of everything. So much pain all the time. This isn't living, it's just existing with pain. What's the point in it all. I'm housebound except for when my Husband makes me go to my hospital appointments.Then when I get back home i feel so ill, and for what. I'm on the same medication now that I was on 9 years ago.The only difference is that the pain have got so much worse. Sorry Mdaisy,i know I'm feeling sorry for myself. But that's it.I see my friends and Neighbour's still going out, laughing and joking and I'm stuck here just watching through the window. Thankyou so much for the welcome but it doesn't help how I feel.It doesn't matter what anyone says, when you haven't chronic pain, nothing can help. Take care and good luck to all you lovely people out there. I hope you feel better soon. Goodnight God Bless Glojo xx

Mdaisy profile image
Mdaisy in reply to Gjkas

Hello again Gjkas

I understand truly I do as the admin team live with Fibro/chronic illnesses and I myself have been bedbound for many years now too. However, I do think that if you posted and asked questions to other members that you may stumble upon something you haven't tried for the chronic pain or tips to cope with fatigue. Also, just chatting and replying to people (even though you seem to say it doesn't help) will share your feelings the same as talking to me now. It must help in some way as otherwise why would you join and contribute I'm right aren't I?

Members here certainly say posting about the ups and downs and talking about it helps a little and you've taken the 1st step to reach out for help by commenting on this post. To be honest, if you are feeling low what have you got to lose but trying to post and get involved in the community x We'd welcome you with open arms and happily try to help you by suggesting things that may help you. :) Please do start a post as this is the best way for all members to reply to you and support you especially as you are feeling the way yo are at the moment.

Have you spoken to your GP about your feelings? Are you taking any medications? Have you tried Capsaicin Cream for the pain? Have you tried Infrared Sauna blankets that can be used at home? - these are some of the suggestions that may crop up and many more besides. Please do not give up hope of some help to improve your condition thus improving your mental health, as many members here say how useful and supportive the community is.

Why not post, introduce yourself and we can all reply to you x This is my suggestion and I think it's worth a try, don't you? Here's a link about how to write a post - support.healthunlocked.com/...

If you are really low in mood you should also consider seeking medical treatment and advice from your local Healthcare Professionals and of course if you need to speak with someone you can also ring Samaritans - this is really helpful and another way to reach out for help. Tel: 116 247.

Can I also share this post with you, as I think it might be of interest..... it's entitled 'Do we need to be strong all the time?'

healthunlocked.com/fibromya...

It highlights that although it is good to keep fighting to be strong coping with chronic illnesses that also sometimes it is also good to listen and acknowledge our emotions. I think it's good you've made the first step to explain how you feel to me and I think writing a post to all members and the replies of support you'll receive plus tips & advice will be beneficial to you.

I hope to read a introductory post really soon and to see you contributing to the community ..... it's up to you of course but I think it may help more than you know.

Sending best wishes and positive vibes to you x

Emma :)

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