AAAAARGH! So for a while, I'm OK. Everything's hunky dory and I almost forget I've got it....... And then......

AAAARGH! Can't plan anything with fibromyalgia for fear that it will hit you, just at the perfect time, like a brick wall and ruin all your plans. Not big plans. Not moving house. Not going on a foreign holiday (as if I could afford it). Not backpacking round India for six months. No, it's just the kind of little plans that a NORMAL life are made of. Just simple things like dinner with friends or, even simpler, like running an errand, or just being able to get up out of bed and make dinner for your kids. I HATE FIBROMYALGIA.

[Hidden]

Sometimes when I`ve had a couple of ok days I`ll find myself wondering why I feel ill, then I remember I am ill .so I agree I ALSO HATE FIBROMYALGIA

[Hidden in reply to Hidden]

Thanks for your reply Mayrose, I know exactly what you mean. I also forget I've got it sometimes and then wonder why my knees / back / arms / shoulders etc etc hurt.

[Lruk]

Ladies, I also hate it but I am looking forward to the time when I can forget about it for a day or two

[Hidden in reply to Lruk]

please don`t get me wrong I love life and can usually see the funny side of things. I can never forget that I have fibro. The painfull muscles, sunburnt skin and fatigue never stops.but I do occasionally get relief from the headachy dizzy, foggy,out of sync vision, fall in the recycling, just about to come down with some nasty virus symptoms.Its when they come back I start to wonder why I feel ill. hugs sue

[Hidden in reply to Hidden]

Hi again Mayrose. I used to have a pony called Mayrose! Nice name! I know what you mean, I really do. I get blurred vision too and yes it's just like having a nasty case of flu when every muscle in your body and every joint aches. But I agree with most of the comments on here. I love my life and I am thankful for the good days (even though I haven't had a good day for a couple of weeks now)! Hugs to you too. A x

[Hidden in reply to Hidden]

Was just recovering from xmas when hubby ended up in hospital, now he is fine whilst I am still recovering from the hospital visiting ect..lol

[Hidden in reply to Lruk]

Hi Lruk. Hope you do get to forget about it for a day or two. I know what you mean. I should be thankful for the good days! I am, honest! A x

[TheAuthor]

Hi Apple4me

I hate fibromyalgia but I love my life! I love my wife, I love my children and I love my grandchildren. So despite the fibro, I wouldn't change a thing

Take care

Ken x

[lynzard in reply to TheAuthor]

Morning Ken, brilliant perspective. Love it. Hope you have a good day. xxx

[Signlady in reply to TheAuthor]

Lovely reply Ken, I feel exactly the same

Hate the restrictions of my life but wouldn't change my family etc. been I'll for 28 years now, fibro, type 2 diabetes, lower disc disintegration, asthma & now hypothyroidism( diagnosed yesterday) but I started my own online business doing what I love & my husband was able to give up his building work ( he's had arthritis since he was 28) & work with me, one of my daughters now works here too. It's a dream come true and although I'm exhausted & in pain most days ( I work from bed when relapse occurs) I am doing what I love! I'm still recovering from massive relapse 4 weeks before Christmas and missed Christmas completely but I look to the positive & tell each day to 'Bring it on!!!'

I do suffer from depression but no one outside family would know.

I look forward to better days & wish everyone the same xxx

Sign lady

[shazzap12 in reply to Signlady]

I am just like you Signlady. I started my own home business 5 years ago and now most days work from a bed which is in my home office. My business is really growing with clients recommending my services and they all know about my illness. I decided not to mourn my old life but to build a new one around my illness. There are some days when I do get down or frustrated when I cannot do something or plans to a family event collapses because I am ill, but I try really hard not to dwell. I have to say the most depressing and upsetting thing I have experienced is the DLA processes of claiming, assessments and appeals. It is a system that is supposed to help that causes me the most problems with my health.

[Hidden in reply to shazzap12]

Hi Shazzap. I like your approach very much! As for DLA I don't know. I have managed to stay in work part-time so haven't gone for DLA. My impression from this site is that it's not worth the stress. Sounds guaranteed to send almost any fibro sufferer into mega flare up! Best wishes and gentle hugs, A x

[shazzap12 in reply to Hidden]

Hi Apple4me

You can get DLA and now PIP whether you work or not. It is a benefit that is supposed to help you live more independently with your disability. I really do not know why they have this benefit and then try so hard not to give it too you. But I will keep trying because I know I more than meet the criteria and the extra money will always help, especially when so many things are no longer allowed on prescription.

[Signlady in reply to shazzap12]

Hi shazzap12

I'm so glad your business is going well

It's great for the soul ( and boy do we need that!) when you feel overwhelmed with symptoms etc to have a positive goal is brilliant for you.

I had years not being able to work ( I tried many times!) was not awarded benefits due to lack of NIC & having husband in work so to eventually after 24 years have got a business of my own ( 4yrs old!) and I'm struggling health wise but enjoy every day

Good luck xxx

[Hidden in reply to Signlady]

Thanks Signlady. Oh crumbs! You have a lot on your plate Signlady! I also have IBS and hypothyroid. Have had since I was a teenager. But the rest of your long list of ailments I'm fortunate to miss! I'm 38 and just 8 or 9 months ago when I got my fibro diagnosis I felt about 80! I was aching everywhere, I had got too overweight and too inactive and I was miserable. Since I got the fibro diagnosis I have taken the bull by the horns, lost more than a stone and more than 3 inches from my waistline, taken up cycling regularly, as opposed to once in a blue moon, and taken my diet in hand, giving up gluten entirely and going low starch and low dairy, which has been fantastic for my IBS. So normally I'm very positive. I just needed a moan! Best wishes and gentle hugs, A x

[Signlady in reply to Hidden]

Hi Apple4me!

Glad to hear you're positive

I sounded like a moaning old bag on my last posts ha ha and I'm not really!

I hate talking about ailments and prefer being positive

Onwards & upwards for us all

Have a good weekend xxxxxxxxx

[Hidden in reply to TheAuthor]

Beautiful my friend xxxsianxxx

[Hidden in reply to TheAuthor]

Hi Ken. I'm with you! I have a wonderful, supportive, loving husband and two fantastic children. Most of the time I love my life even with fibro and in some ways it has actually been good for me. I have learnt to pace myself and relax, which is good for anyone whether they've got fibro or not. I have turned my body clock back at least ten years in the past year through exercise and healthy diet. I made a lot of very positive changes in my life as part of coping with / managing fibro. I also enjoy working part-time instead of full time and spending more time with my family. So I shouldn't complain, but it's been a hard couple of weeks! Get fed up with pain sometimes when it just feels unrelenting! Thanks for your reply. Keep cheery!

[TheAuthor in reply to Hidden]

Hi Apple4me

Just sending you positive thoughts and sincerely hope that things pick up for you.

Take care

Ken x

[Hidden]

Hey there!

One thing for sure is that you are definitely not alone with this one it comes with the territory as they say.

I'm afraid its all about pacing and getting the balance right once you achieve that (be positive) you should find you can plan more. The spoon theory didn't work for me but has done for many others and you may be interested so the link you need is butyoudon'tlooksick.com

Share your feelings with your nearest and dearest so that they understand and can take your needs into consideration, if they don't know then they can't.

The times when it hits you out of the blue................ ride it till it goes! drink plenty of water and rest.

Have you ever considered a Pain Management Program? You can ask your GP, explain this and they should be able to offer some help.

I've missed out on a number of things because of illness or fatigue and I have (personally) found that there's no point grieving it or all you'll end up doing is keep grieving for what you could have had rather than trying to make things happen.

I hope you beat the fibro monsters and sending armoured healing fluffies to help you send them packing xxxsianxxx

[Hidden in reply to Hidden]

Thanks Sian. I have had fibro for about 2 years with a diagnosis about 8 months ago. I've been getting the hang of pacing with some success, but I think going from that busy Christmas period back to work was just too much for me. I have managed not to miss work but I've had to spend almost all my afternoons in bed. I have read the spoon theory and I've had help from a physio re. pacing. I do tend to overdo things and make it hard for myself. Sorry for moaning. I am generally a very positive and cheery person! Honest!

[Hidden in reply to Hidden]

Hey! moan away hunny you're amongst friends

Pacing is difficult because our symptoms chop and change like the wind, we have to be partially psychic and try to predict when something isn't going to work properly.

We all overdo it all the time its so frustrating but you get back into it and everything becomes ok again. Give yourself time to readjust and do what you're already doing

Keep strong and positive, and maybe ask about pain management xxxsianxxx

[Hidden in reply to Hidden]

Thanks Sian. Ha ha you are right about being psychic! That would be really handy! I'm also still in the learning process when it comes to knowing what will trigger flare ups. I've mostly found exercise ok if I'm relaxed and don't overdo it but some conversations, which shouldn't be stressful but were for one reason or another, have been enough to send me into a downward spiral. It's a very strange illness. Anyway, I'm cheerier today as I slept well last night for a change! Yes, I will ask about pain management. A x

[Hidden]

I hate it, and I can't pretend otherwise. I haven't reached the stage yet where I've stopped grieving for everything it's taken, as it's only just happened. I've tried to be brave, but the experts say you have to allow yourself time to deal with your loss of identity. I want to moan, and rant because I am sad. Really really sad and very lonely. And I have no idea what I'm going to do. I HATE FIBROMYALGIA

[Hidden in reply to Hidden]

Hi Lipbalmaddict (I love lip balm too!) How long have you had fibro and how long since diagnosis? I cried buckets at the start! First coz I didn't know what was wrong with me and then because I knew what was wrong with me and realised that it meant the end of life as we know it! I moaned and ranted and whinged to various friends, which made me feel much better! I am fortunate to have a couple of friends with same or similar (chronic fatigue etc). I agree with you, you do have to grieve the loss of normal life. But then hopefully you can open yourself up to a new life that works around fibro. I have turned my life (and my husband and children's lives) totally upside down, which was near impossible at first, but now we're into a new routine. My husband does all the school runs and often gets kids up and out of house before I'm even out of bed. They leave at 8am. I can get breakfast and take my time to get moving - takes me ages in the morning. Then I go about whatever I'm doing for morning whether it's a work day or a day off. I come home for lunch and then go up to bed for a rest. Husband brings kids home. I get up and help with homework and make supper then go straight to bed, often before kids. Anyway it works a treat! Fibro is absolutely rotten. I do hate it. But I also realise we can work around it. Others are not so fortunate. I was thankful when I got my diagnosis that it wasn't anything more serious. I had been imagining cancer and all sorts of scary things prior to diagnosis. Yes be brave but don't expect yourself to be superwoman. Give it time. It doesn't even need an awful lot of time. I have learnt TONS in the last few months since diagnosis. I feel that I'm now looking after my health better than ever. Hope you can get to feel the same. As for feeling lonely, that is a terrible shame. Do you have any friends and family around you to support you? Mine have been invaluable.

[Hertsman]

Fibro sucks and my GP just doesn't get it. To be honest her ignorance is shocking and that is being polite. Only another sufferer truly understands this invisible disease. The pharma industry make shed loads of money out of our misery so not really cost effective for them to find a cure. I have found some relief by using magnesium oil, it might help you. Hope things improve for you.

[TheAuthor in reply to Hertsman]

Hi Hertsman

Your first sentence jumped out at me there. It's a twist on the old adage of takes one to know one. I think that you are spot on, it takes a sufferer to know a sufferer!

Take care

Ken

[Hertsman in reply to TheAuthor]

Thanks Ken, just wish there was a specific medical test to prove my illness. It has pretty much destroyed my life. My main interest is guitar but everything just seizes up when I try to play. The worst pain is in my lower back. Had lower back surgery 1994 which didn't really help. I have a group pain management course starting in Feb which I'm hoping will help. CBT was helpful but since the course ended I'm now struggling again. Just about managing to hold a job down but my employer is not very understanding. Sometimes I can't see any purpose for living.

[Hidden in reply to Hertsman]

I hear you Hertsman, it's destroyed mine too! I've lost my job, home, horse (that was my 'hobby' - an understatement as every waking moment not spent working was riding, competing, caring for horse), now I can't even hold a brush to groom her, and she's been re homed, as have my 3 cats, because I don't have a home. I've just started therapy but it's not even scratched the surface yet. As you say, people just don't get it. Today my mum said to me, I'm not surprised you feel low, you don't do anything anymore, you need to get out and start socialising.....! I feel like I'm hitting my head against a brick wall because I was of course socialising before the fatigue became too much, and the pain stopped me in my tracks. And I still try, and sometimes I can, but other times my body hurts so much that just changing my clothes and brushing my hair is such a mammoth effort, that I have to politely decline, while cursing what my life has become. She just doesn't get it. X

[Hertsman in reply to Hidden]

Lipbalmaddict, really sorry you have lost so much through this horrible disease. I'm just hanging in there for dear life. The thought of being out of work is more awful than the illness itself. At least work gives me a reason for getting up each day. I'm very lucky that I can work from home, no way I could travel every day. I totally get you on the socialising issue. People just don't understand that socialising is the last thing on my mind. I know this sounds awful but seeing happy people just makes me feel more miserable. Even just typing this simple reply takes so much thought and concentration. So many things I used to take for granted, it really has made me a bitter person. My CBT counselling was okay but required lots of hard work and I just didn't have the energy to keep it going. I also tried a therapy called Mindfulness which helped a bit. Hang in there, I really do hope things improve for you. X

[Hidden in reply to Hidden]

Hey Lipbalmaddict. So sorry you lost your horse and your home. I love horses. Maybe you will find that your health improves as you learn to manage it through pacing, healthy eating etc. I hope so. Must go now. Eyes gone completely blurry. Can't see at all. Good thng I'm a touch typist!

[Hidden in reply to Hidden]

Thanks for your kind words. I was diagnosed in 2009 and it's just got progressively worse for me really. Living on my own didn't help as pacing wasn't really an option, particularly with no support network. I was 3 hours away from any family. It's finally came to a head last Spring when I went under at work and that's when I lost everything. From successful lawyer to claiming benefits at 37 and losing everything was just the worst. As you say, it's hard not to be bitter! I'm being investigated for RA/Lupus too, and have been diagnosed with Bipolar too, but to me Fibro is the worst because people (including GPs don't believe it's a real illness), and at least the others are treatable. It's sucks, but I'll give the magnesium spray a whirl, and gluten free! Thanks guys xx

[Hidden in reply to Hertsman]

Thanks. I have not heard of Magnesium Oil, Hertsman. Where do you get it from? Is it expensive? How do you use it? Massage? I take Magnesium tablets and think they're great. I really hope they do find a cure for fibro. Sometimes I wonder whether it will happen in my lifetime......

[Hertsman in reply to Hidden]

Hi, I get it from Holland and Barrett. The brand is BetterYou super saturated pure mineral magnesium chloride oil spray for faster tissue absorption. Costs about £12 in H&B but you can buy it cheaper online at other websites. I don't want to bore you with the science but transdermal method is more effective than oral. Buying the oil ready made is quite expensive. However I have found a way of making it cheaper by making it myself. Cheapest method is to buy the BetterYou 1kg pack of magnesium chloride flakes. Mix half a cup of flakes with half a cup of hot purified or distilled water. Wait for it to cool and then dispense the mixture into an empty spray bottle. It will last you forever, exactly the same thing as the oil which costs just over £12 for a small 100ml bottle except the 1kg big pack of flakes is only £9. Spray it on the soles of your feet, under your arm pits, sides of your body and any sore joints. Apparently with the transdermal method your body only takes what it needs. It really helps with tight muscles and sleep. Good luck and hope it helps you.

[Hidden in reply to Hertsman]

Great. Thanks for the tip Hertsman. Always keen to save money as having fibro is very expensive! I will try it.

[Shazzzy]

This is for lipbalmaddict and anyone else who has not already done so, please get your doctor to check your vitamin d levels, people with fibro usually have low levels, which causes muscular pain.

[Hertsman in reply to Shazzzy]

Thanks Shazzzy, first time I had my test my vit d level showed 13 which was low. Doc said it should be 25 or above. My testosterone level was also low at 9.6 but doc said it should be at least 10-13. Looking at research on various sites it seems even the recommended levels are still very low. Anyway to cut a long story short, using supplementation my levels have now apparently normalized but it has made no difference at all, I'm still in a great deal of pain. I have an olive skin and perhaps that is the reason I don't absorb much vit d from the sun. Apparently the best vit d is from the sun but unfortunately we don't get much of it here in the UK. I visit Cyprus every year, my parents live there. As soon as the sun hits me I feel so much better, you just can't beat natural sunlight.

[Shazzzy]

Hi hertsman, totally agree cannot beat sunlight for feling better unfortunately we don't get enough of it in Scotland. Sorry to here the vit d did not help you, I found it very helpful. Perhaps we should all emigrate to somewhere warm!

[Hidden]

Thanks for thinking of me Shazzy, I had v low vit D when diagnosed, and had injections and take daily supplements so my levels are around 70 now. Sadly it didn't make a difference for me, but I have a friend who was diagnosed with Fibro and vitamin D put her into remission, so it clearly works for some x

[Mdaisy in reply to Hidden]

Hello Lipbalmaddict,

I would like to suggest that you consider the possibility of misdiagnosis for your friend as the symptoms of Vitamin D can be very similiar to Fibro. Please see this link about the diagnosis of Fibro;

fibroaction.org/Pages/How-I...

Misdiagnosis can happen & may explain the remission your friend experienced when treated with Vitamin D, however it may even be as you say she did achieve remission from Fibro where her condition is stable and the medications/ activities/treatments with a combined approach has meant she has less or no symptoms.

Please see the post below where the Founder of FibroAction talks about her remission from Fibro;

healthunlocked.com/fibroact...

I have personally found I seem to go up and down, do all the hard word of pacing, exercise tolerance, medications , gentle exercise, therapies etc, basically a combined approach to have a couple of years of not normal 'healthy' person life but an adapted version. A quality of life that wasn't too bad considering having Fibro but better than not having those 2 years I have recently gone down again but I'm determined and positive I will get there again !

I think we are all different and it depends what works for us. I personally think learning about the condition & yourself, finding medications that work for you, a way to manage your stress levels and finding the ideal combination for you is the start. It is difficult, very difficult there's no denying and some people have other conditions they are battling with but some people can achieve an optimum level of health for them.

When I first started volunteering for FibroAction I used to 'say people suffering with Fibro' and Lindsey Middlemiss, founder of FiboAction corrected me and said 'you should say people living with Fibro as not all people in the UK are suffering as some people have adapted their life to manage their symptoms as best they can.'

You may find this link helpful which talks about listening to your body, you may find the whole 'Expert Patient Series' of interest too

fibroaction.org/Articles/Be...

Please don't think you cannot get there too, we are here to support you and it is possible, many achieve an optimum quality of life.

fibroaction.org/Pages/What-...

Hope this helps

Emma

FibroAction Administrator

[Hidden]

Thanks Emma, that's really interesting. She was 100% well after vitamin D and was able to return to vigorous exercise and heavy lifting without any aches or pains, and any fatigue went away, so maybe it was a misdiagnosis and simply vitamin D deficiency, if it can mimic Fibro? I can remember well feeling pleased for her but incredibly upset when the same didn't happen after my injections! X