I'm aching. My body or my mind? I can't tell but it hurts. My heart is breaking before my eyes. I see that. Why am I not how I was?
There it is, that deep burning ache, that pain almost makes me feel numb. Numb to bones. The jabs, twitches and spasms. That zip of 'nothing' ambles through my body as and when it pleases. Headache today.. On top of my Jaw, hip and back pain. The throb. Here today, maybe gone tomorrow. Maybe not.
The 'unnecessary' noises that flood my brain, the flood rises, creates a fog..
In the mist I can't see the picture, can't understand the question, I cant work out what you mean as you're speaking to me.. I can hear you next to me. I can hear the repetitive tapping of road works in the distance as if the maintenance men were in my ear, I hear the beginnings of an argument about to occur between my squabbling children, I hear the text come through from work, once, twice... The kettle boiling, the phone ringing, the neighbours cat flap, the dripping tap. What were you saying?
I might explode, you'd see shards of frustration and splats of shame. Splinters of anger. Puddles of self pity instantly sucked greedily from the ground by guilt.
I don't want to go out, I'm too tired to play, the trampoline will have to wait.. Give me five minutes kids.. Please. I am unable to proceed but can't stop, can't relax. Restless legs.. That's the polite way of saying it.
I'm sitting in the sun, my fingers are stiff and ever so slightly blue.
I'm sitting down after sweeping the floor, resting after putting the Hoover round. Yes I feel lazy, yes it is embarrassing...
Not as embarrassing as cancelling our arrangements again, forgetting their birthday, not calling you back. Not as embarrassing as snoring louder than a hog, persistent perspiration or wetting myself in public..
I'm grumpy and negative today 'not my usual self'.. Are you sure?
I'm sure I'm losing my mind...
My doctors says "sounds like you've got fibromyalgia"
Welcome to the forum, and it is wonderful to make your acquaintance. I am so sorry to read that you are struggling and suffering so much with your Fibro, and I sincerely hope that you can find the answers that you so desperately desire and deserve.
I am sure that many of the members will be reading your post, nodding, and saying I can relate to everything that you have written. I want to genuinely and sincerely wish you all the best of luck.
I have pasted you a link to our mother site, FibroAction which hosts loads of useful Fibro information:
My words, are a spillage, an improvised poem, of the deepest, darkest moments.. Please be reassured that my offload is not my daily mindset - I wanted to describe the worst of it, be open about the struggle.. Shed a layer.
I was diagnosed with hypermobility at 10 years old, I thought all these other persistent ailments were just life.. And that I was the problem, it was me that was lacking somehow.. Moaning.
Until this year, I have never sat down and discussed every symptom. I try hard at life, always have, just 'got on with it'. I've worked in health care for nearly 13 years, I think it was my way of shutting myself up about my symptoms. Comparing my situation to people with 'real' illnesses... Perspective.
I have not been officially diagnosed with fibro, just starting the process of elimination, my doctor seems quite sure.
I'm hoping to learn how to let go of the negativity and enjoy all the positive aspects of my life, make the most of it.
Any guidance will be gratefully received
I'll take a look at that link after the school and nursery run. I've taken today off, for me
I have been diagnosed with hypermobility (20 years ago), but I'm just in the process of ruling everything else out. Nothing has come back from my blood tests so far, I've got an appointment in late May with maxilio facial surgery as the right side of my jaw pops out daily and I've had a referral to see a rheumatologist but still waiting for that..
i was in shock when i had to have other disabilities ruled in/out after my HMS/EDS diagnosis so i empathise with you.
Can you get an nhs referral to stanmore hospital hypermobiltiy clinic for specialist assessment, rehabilitation and support? They're experts in the field of hypermobility and are used to helping patients with other add ons eg fibro.
I want to genuinely and sincerely wish you all the best of luck with getting a diagnosis one way or another. I can understand completely where you are coming from and I know myself that each and every day can be different.
All my hopes and dreams for you
Ken
Hi Sibbs. Hope your doctor can give you something to help you cope with this debilitating condition. I'm sorry you 're feeling so low and in so much pain. My heart goes out to you and I can empathise with your symptoms. Like you, I expect many of us experience the feelings you so vividly describe and I, for one , find it hard to understand them never mind communicate them to anyone. You have been so brave to let us be privvy to your innermost thoughts. Please don't let this condition let YOU take the blame for how it makes you feel. Please hand over what you say are feelings of 'shame, anger and self pity' right back to FIBRO. I would like to think that those who know and love you believe it's not your fault that you cannot manage to do what you used to, until that is, you get some good pain and mood meds. It's an unforgiving intruder into our bodies and minds but with the support and advice from fellow sufferers on this forum let us join together and fight for the best way of life that we in our own circumstances can manage. Your words have reduced me to tears and struck a cord. I wish I could give you a big hug and make you feel better. Let us know how you get on if you can. Always here for you.xx
Md55
in reply to
Md55
Hello and thank you so very much.
The realisation that I'm not loosing my mind is so new to me. This can't just be life and I'm not coping?
I look at others and think how does everyone find it so easy?
Others see me as the capable one, fun (sometimes), energetic, caring, responsible, strong both physically and mentally, compassionate and conscientious, clever... I should be able to do anything. Achieve anything.. But I feel I can't progress with this thought over me..
"Are my symptoms real? Or just in my head?"
My own self doubt is the problem. My partner is very supportive, understanding, our kids are too young to understand.. I've only just started discussing with family and friends...
The knowledge that it is 'something' is almost a relief.
I feel grateful and encouraged after only 1 post. It's lifted a weight. Sad in the knowledge that others have to experience this but inspired all the same.
I hope to bring as much as I receive from this group.
I am much better at getting it all out when I write/type it.
Words fail me... Guess the same goes for most. It's either an indescribable illness or a long winded over explanation (of a million minor ailments that collectively become very challenging or for others dehabilitating) that can bore others half to death.. And make you/me/us feel like a fool or a faker
x
Hi Sibbs,
I am so sorry you have been feeling like this. Did you read my mind and tell my story? I can 100% relate to everything you wrote.
I don't know if anything I say will be of any help; but finally, after years of being told "It's ONLY fibromyalgia" as if I was complaining about a paper cut, I now have a decent medical practice that is taking things seriously. Last year was dark for me. I became really ill. Within a three week period I:
Found out I had gallstones, developed Hypertension, had abnormal ECG, developed Diabetes and was diagnosed with Carpal Tunnel syndrome. This was on top of the FMS and fibroids already diagnosed.
Statins made my muscle spams frequent and permanent, and I had to come off them urgently after I ended up in A&E with chest pains.
Most of the illnesses has been fobbed off as FMS when I lived in London. I moved to Derbyshire and my health needs were taken seriously. I ended up seeing 4 consultants.
I had carpal tunnel release surgery to save my right hand. It was at the point where I could not even hold a pen any more. The FMS has hindered recovery, but I am able to do a margin more than before the surgery. It has gone back to where it was about 18 months ago. However, I am now on Zomorph twice a day. Without the morphine my hand is in too much pain to do anything. So it is not ideal.
My GP realized that when I fell over and took diazepam I reacted badly and had to be hospitalized. So she gave me a different tablet. I was to take it when I had a fall. Now, because of the statins, I have to take it twice a day. It is called Tizanidine. Please look it up. It is given for some FM symptoms, mainly the spasms and cramps. It really does help, although mine are at the level that without them my cramps last all day and are really painful and debilitating. If you do suffer with bad spasms in your muscles, please ask about this tablet.
My consultant cardiologist diagnosed my balance problems as caused by postural dizziness. This means that when I stand up or try to walk, my brain thinks I am still sitting down. I lose my balance, fall and hurt myself. Often I have ended up in hospital from this and even ended up in a fracture clinic. I fell after my surgery in December last year and landed on my damaged hand. It impaired the healing process further. I also hurt my toes and it still hurts today. I have a wheelchair for use outside the home and for going to places. I also have a scooter, for personal independence.
I don't know if any of these symptoms are familiar to you. If they are please get them investigated. Now when I see a doctor or someone who asks me "Why are you in a wheelchair?" I can tell them I have postural dizziness and they understand without further explanation. Doctors keep telling me that I "REALLY have Fibromyalgia, you know PROPER fibromyalgia" because many doctors still think it is a euphanism for hypochondria and is a made up illness. Other consultants recognise that some people genuinely suffer. Perhaps we need a new name for it that is not disregarded by society, for those of us with more permanent symptoms. The tiredness is killing me. I got an hour's sleep last night. Perhaps that is why I feel so lousy today. Yesterday I got 40 minutes. The drugs make me drowsy but then I wake up after a short time and cannot get back to sleep.
Some of the things I have done to help my symproms are:
Tizanidine. I cannot stress enough how wonderful this drug is for cramps. Even if it just reduces the potency or duration of them, that is wonderful.
Turmeric. I put it in all my food, but my Mother takes it in capsule form. It is a natural painkiller.
Ginger and peppermint. FMS often causes IBS or other gastric symptoms. I drink peppermint tea and Lemon & Ginger tea, sometimes both in the same cup, and this helps with a dicky tummy or excessive wind. Again they re natural painkillers and muscle relaxants.
Stevia. This is a natural sweetener.
AVOID ASPARTAME like the devil.
AVOID MSG as much as possible. It also makes you feel bloated and in pain.
I drink bottled water rather than tap water. Tap water has too much fluoride. Although fluoride is good for teeth, it is bad for FMS.
The most important thing to have checked is your Vitamin D level. Lack of vitamin D causes FMS symptoms, and for those with FMS it makes them 100% worse. People who are unwell are less likely to go out. For some FMS sufferers, Hot and Cold weather can exacerbate their symptoms. But we get Vitamin D through sunlight. I take Vitamin D daily, as prescribed by my GP. This just keeps my levels topped up.
My FMS is at the point where I am totally debilitated. I want to work, and I can't. It is so frustrating. I am sick of being in pain. I love life, but hate the pain and inconvenience.
I hope some of my tips can bring some easement into your life or the life of anyone else with FMS. I have discovered these things through experience and a blinking excellent GP. I think the postural dizziness diagnosis was the most important thing. It explained why I had problems for nearly 20 years. It was one of those things that annoyed me. Why are YOU in a wheelchair? It's ONLY fibromyalgia. People are so judgmental and I am sick of it. But for some reason they respect a diagnosis of something they understand far more than a personal explanation of how I feel. So that diagnosis is liberating. It means I say two words instead of a diatribe. LOL
Take care Sibbs and feel better soon. xx Hugs
Oh, I have just shared this post with Facebook, as I have some friends with Fibro who may find it useful as well. Thanks for your beautiful writing Sibbs
Dear sibbs...you have just described my life in what you have written that I am crying.Life is hard work and I haven't the strength or inclination to live at times...now my mind has gone blank....great..You are not alone huni.Sending you a gentle squeeze.x
I wish I could speak the words as easily as I write them. Explaining the depth of the symptoms often gets stuck on the end of my tongue..
Recently friends have asked me "what is fibromyalgia?"
Often my reply is a simple "shit! That's what it is"
I'm not even diagnosed at this stage but have been silently.. Unknowingly struggling for years, constantly battling between thinking I'm a mental hypochondriac or a hardcore survivor and never knowing which... Never knowing how people around me see me. Am I fun anymore? A good parent? A huge moaner? Depressing? Do I support those around me or do I demand attention?
I hope you are at a stage.. Not so baffled by this 'nothing' that embeds it's self into so many parts of my life..
The suggestions ive been given to help ease these stresses.. It's costly!
"Take up yoga" - at £8 a session, if you're paying I'm up for it..
"Take some time out for yourself" - if I'm not looking after my 2 girls, I'm out working.. I can't even take a wee in private these days..
"Eat organic" - We grow our own veg, as much as we can anyway, to save money..
Life is hard, times are hard.. And it scares me!
At what point in my life will I be able to afford to be well?
Prescription charges, organic food, supplements, massages, swimming, yoga, Pilates... But most of all time! This time consuming, self indulgent, mindless, faceless, nameless syndrome..
Again that says it .Have been to hospital today for rheumatology rehap and this young pomposs young man makes me feel a fraud and hypochondriac. He tells me I could run a marathon if I put my mind to it!!!! He has absolutely no idea what life with fibro is like.In fact he really dismissed it as an illness.If only it were!!!!! Its real and yes its shit.Not sure I want to go back in 3wks time.x
What an ill informed, ignorant person. Please ask to see a rheumi who has a knowledge of this condition. Mine does and it makes such a difference that someone understands how we feel. It is so important for us to know that what we go through every day is recognised as a serious, life changing, awful condition that affects all aspects of our daily lives. I hope you persevere because just having a health proffesional who really cares helps so much.x
so sad to read but I completely understand, you have made me think about my own symptoms. Love and hugs to you x
I feel that your post along with other replies is what I go through too. I have a million words in my head to say and then can't say or write them. I have downloaded the fibro app and every time I feel something or do something I write it in my journaL. Moods, feelings, chores anything ....and my doctor I getting it printed net time I go and see what she thinks after reading it.
I really want to write a book on How fibro stole changed and ruined my life. And how I am trying to get it back by being on forums like this where everyone is so helpful because we go through similar days with our health..big hug xxx
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