Welcome to the Fibromyalgia Action UK HealthUnlocked Community !

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 16,500 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...

Within this community we currently have the following Community Administrators;

Hamble99b- Admin on behalf of HU

healthunlocked.com/hamble99b

TheAuthor -Admin on behalf of HU

healthunlocked.com/theauthor

Ginsing - Admin on behalf of HU

healthunlocked.com/ginsing

M0AL61 - Admin on behalf of HU

healthunlocked.com/m0al61

Hazel_angelstar - FMA UK Administrator & Admin on behalf of HU

healthunlocked.com/hazel_an...

Desquinn - Vice Chair & Webmaster

healthunlocked.com/desquinn

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;

FAQ - How do I lock posts & find out about privacy within HU communities?

Other helpful/important information can be found in the categories below & 'pinned' posts can be found at the side of the community too;

FMAUK Blog - FMAUK FAQ - General &Useful Info - Guidelines -PLS READ - HU Technical FAQ

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

To find out more Fibromyalgia Action UK, please see the following links;

healthunlocked.com/fibroact...

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 :)

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  • 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

  • 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

  • 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

  • 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. 😃

  • 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.

  • 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.

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

    Thanks Dale

  • 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.

  • 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

  • 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?

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

  • I will have a chat with you some time Debbie

  • 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

  • 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

  • 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.

  • 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.

  • 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

  • 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

  • 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

    ⚽️

  • 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.

  • 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

  • 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

  • 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!!!

  • 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. 

  • 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.

  • 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

  • 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🤗

  • 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

  • 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

  • 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!

  • 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.

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