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Fibromyalgia Action UK
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Hello all, my illness started of by having a head on car accident back in 2005. I was left with extreme pain to my neck and lower back.....

Following this I was told i had 2 bulging disc in both areas of pain.I had referred pain to my chest and shoulder blades also.

I went on to find out i had shingles in my left ear, whilst my husband, daughter and i were on holiday in the Maldives 2009. More recently, in November 2012 ,again on holiday in this wonderful country, i managed to get Hepatitis A from a mozi bite on my arm that was infect by sewage in the water!!!

I have been left with extreme sensitivity to both of my arms. For material to touch me, its unbearable and my arms feel like they should be bruised they are so painful.

I also have pain to my knees, groin and feet. Life everyday is PAIN.. I have, what i now call, a totally rubbish body. But then i look/hear/ see others who are even more seriously ill and those terminal diseases. I feel bad for feeling sorry for myself.

I have however i managed to keep myself in apart time job, just so can keep some kind of routine for my day 2 day life. My friends i am, sure think i am a fake, because i try to smile or joke away the pain, but i know when they look in my eyes, they see the pain, They say your eyes are the windows to your soal.

So since 2008 I have tried Gabapentin, Pregablin (started this after Shingles), oxycontin, oxynorm, fentynal patches, tramadol...to be honest you name it, i think i have taken it. Nothing works.! The Gabapentin and Pregablin made me forget so much i couldn't remember how to use my washing machine, or, i'd think i turnt the cooker off,when i had only turnt off its light, thus burning my little girls biscuits. I struggle to bend down to look in the flippin cooker as it is, so my smoke alarm is my cooking guide.

Acupuncture is the best i believe, and reiki if you can get it.

The crux of it is, you have to believe you will not die of this, its all severe nerve damage is how i relate to it.

Nerve endings that make me want to stay in my bed, tucked up under my quilt, only it hurts to stay in bed (even if it is an expensive memory mattress). I am 43 and feel 83yrs old....i wish i could wake up and it be a bad bad dream :-(

I am particularly browned off and low at the mo because, yesterday, my employers of 16yrs, told i did not qualify for the 3rd year running, to get a pay increase (even though its only a measly 2%) because i have had to take time off in the year.

My team leader knows i don't put on an act and believes me when i say i feel cr*p but carry on, and i even managed to carry on working throughout the Christmas spell etc without knowing i had Hepatitis A

Christ had i known that's what i had before my blood test confirmed it, i would have retreated, but that's what happens when you live with this diagnosis, you have to just ride the storm.....

My pain is my neck, shoulders, back, legs, feet, knees and arms.

Restless legs is my enemy, it's my biggest trauma at night when i could cheerfully 'rip' my legs off, but nothing helps.

I have just finished having had physiotherapy to my legs and knees to try and restrengthen the muscles which are now getting weaker due to my fear of exercise. I have now gained several extra stone in weight due to lack of mobility and being 5ft 10" doesn't help when my knees give way and i spectacularly fall down, which again causes yet another injury.

I really better sign off before you all go to sleep reading reading my woes. Thank you to those of you have managed to get all they way down here without falling unconscious.

16 Replies
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I'm still awake! Constant pain is awtul I know and theres nothing can be said to change that. But it is good to just get it out there and talk to peopl who know and understand what its like to feel this way. For the collapsing legs, have you tried a walking stick? I have one (and I am only 38) it does help prop you up and less likely to look like a raggy doll when your legs go! There are meds for restless leg syndrome, I have been offered them in past? Meds are always hard, it does take ages to find one that works, what about being referred to a pain clinic it works for some? Thats about all I can say but there are great peeps on here that can prob give you better ideas than me. Its a case of trying to keep trying and through here realising you are not alone xx

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I sometimes think that we cause some of the extra pain by the way we are so tense all the time because of the pain, okay we don't cause the pain and the pain is real, but i have found that doing a body scan meditation before i sleep have helped with the restless legs syndrome and allows everything to relax, though that is not the point of meditation. Meditation is to relax the mind and i believe that Fibromyalgia pain is caused in the mind. Mt FMS began when i was 4 yrs old and exploded two years ago when i fell down stairs after an horrendous life. People keep thinking i will get better but although i am more in control of everything these days i have accepted that i am not getting better, ever.

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That's so true Migrembe, I have had a couple of weeks recently where everything negative that happened, i have taken to heart. And, rather than express how i was feeling, i built it up, and up, and when i couldn't take anymore i exploded in tears of total frustration at my husband. As it is, I am always over thinking things, that i say to people, thinking that i may offend someone. Silly, because i genuinely offend even my worst enemy if i wanted to.....I don't know how you've managed all those years since a child with this condition. You must know every kind of concoction of tablets that work or don't work. I have tried the natural therapies with healing and acupuncture. My hospitals physiotherapy do acupuncture and if you can get in on the NHS for free give it a try.

Sad thing is, now i have had the Hepatitis A illness (For which First Choice are going to pay for) and now i have been told that i would have to disclose this to to them. Not a problem, but not something i wanted to have to add to my list!!

Take care and hope u have a good (pain free) weekend. :-)

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Good Morning to yu. The sleep club is not around at the moment and tablets not kicking in enough for me at the mo.

Fortunately I am in the system see a pain psychologist ( next appt is in May though) and I see the pain clinic at my local hospital. Took a long time to get diagnosed believe me but at least its confirmed.

They are great, and the pain consultant got me off the morphine based drugs because I could sit all day in a dazed stuper and still have the strongest pain spasm going on where I couldn't turn my neck around or move without hurting.

I've tried to help myself with the acupuncture and healing. My lovely mum will do anything to help and got me one of those massaging chairs which can help sometimes. Money became an issue when I tried keeping up with acupuncture - family came 1st

This week ,everything went a bit pete tong and I had a major breakdown crisis wednesday night. it was that feeling where I just wanted to run away from all the day2day stresses that are continuing to build and build up.. I felt so hurt when my employers chose not to give me a pay award because I had taken time off after a fall in February!! Its a minor complaint in the great scheme of things when in reality i should be greatful i have a job!

iThis morning I am going into work and advising that i am going to get legal advice. They know my medical history. They know i have a blue badge to help me with my visits to town. I do not at present claim any benefits, not sure if i qualify?? the walking stick sounds like a sensible idea, one that my family keep nagging me about. Time now for my vanity to take a back seat and to support myself :-)

Sorry in advance for my tangents of flitting from one subject to another. It's part of the manic way my life's become since taking sertraline 150mg in the day and 100mg of amitryptaline @ night! Just so I can get some sleep Zzzzzz. Night

.

Thanks for your advice,

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Hi nattynoo, I am so sorry that you're feeling so ghastly. I think we all understand to some degree what you are going through, though how fibro effect everyone varies, the are many symptoms we sufferers have in common, but at the end of the day I believe that everyone's experience is individual. It sounds like you have really been through the mill since your accident. Your employers sound very uncaring and I think that maybe you will have to do what so many of us here may have had to do and that is to weigh up the costs and benefits of working balanced with the minefield of getting state benefits. I have had fibro for over 30 years and have been unable to work even as "therapeutic earnings" for the last 21 years and unable to work at all for the last 8 years.

Like snowbell, I wonder if you could get referred to a pain clinic if you haven't already done so, that helped me and I am thinking of perhaps going back and seeing what has changed in pain management since I was last there.

Sending you lots of healing thoughts and gentle hugs. Foggy x

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Whoops, Foggy as ever, misses out on much .....lalalala you're already in the pain clinic.......please forgive ! Foggyx

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LOL...i can totally understand your confusion, i feel foggy most of the time also. When i read my blog back it was a wee bit 'all over the place'. This is why i call myself nattynoo you see...or what my colleagues call me 'nuttynoo'....Thanks for your advice.

Your so right about the mind fog. I forget so many times what i am saying half way thru a conversation.

I make a joke of it and say.' The train from Platform Nat, has now left the station. Hopefully, when it comes back round, i will have remembered what i was saying' Humor is the only other way to deal with this sometimes ,otherwise you'd cry.

I do think i need to reschedule another appointment with the consultant. The Pain clinic are really good in Basingstoke. When i saw them a month back, i was managing not to bad, then i had a fall, and my whole body took the weight of my fall. Even if i can't see them straight away, they will call me back to see if we can work though it til i can be seen.

Fortunately i was given some good news...my HR manager reviewed my situation after my team leader said i was querying how they could do it again. They just want one of my letters from the hospital Pain Clinic and easy as that, i am back in with a chance of woop woop 2% rise!

Take care and thanks again for your reply :-)

Have a good weekend Nattynoo x

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Hello nattynoo everything you speak we all have or know about its not easy i know ,I have had it since I was12 years old ,had 3children when I thought I would die because the pain was horrible ,n fact I have survived it I am now 61 and it just gets worse more things to deal with more things going wrong .I believe the most important 2 things I can tell you take excersise when you can and get a relaxation sleep app it helps me such a lot .Keep your chin up xx

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A little poem for Nattynoo.

.Poor Nattynoo has really tried,

she's baked she's boiled and grilled and fried

her family look on in wonder

at yet another charcoaled blunder

they understand and dont deride,

her smoke alarms' her cooking guide.!!!

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Ahhhh thank you so much for that lovely little poem. I will get that one written up and put on my fridge :-)

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hi Nattynoo all i can say has been said

so take what you can and stop trying to be soooo

strong . you are not on your own now you have us

to mone to soft hugs and best wishes xxxx

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Thanks Kath....your all really lovely, My new supportive cyber fibro friends :-) x

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I also developed fibro after a car accident and same injuries you describe. It really changed my life this event. Is baclofen not helping your leg restlesness? It works with me, I find much harder to find what works with pain, specially my neck, shoulders, trappezium the muscle that surrounds the neck and shoulders and my right groin since a few months now. The rest of my pains move about, come and go almost every else in my body, lower back of ourse, toes, feet, finger tips, fingers, hip, hands and so on. For what i haven't found anything that works is for my extreme fatigue, which is really depressing me. I'm strugglig with my stomach really bad too, I keep getting infections all the time as well, which makes my existence unberable.

In july is finally my trial, if any, don't know how this is going to help but I am sure i'll find out soon. All the best, keep calm xxxx

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I also developed fibro after a car accident and same injuries you describe. It really changed my life this event. Is baclofen not helping your leg restlesness? It works with me, I find much harder to find what works with pain, specially my neck, shoulders, trappezium the muscle that surrounds the neck and shoulders and my right groin since a few months now. The rest of my pains move about, come and go almost every else in my body, lower back of ourse, toes, feet, finger tips, fingers, hip, hands and so on. For what i haven't found anything that works is for my extreme fatigue, which is really depressing me. I'm strugglig with my stomach really bad too, I keep getting infections all the time as well, which makes my existence unberable.

In july is finally my trial, if any, don't know how this is going to help but I am sure i'll find out soon. All the best, keep calm xxxx

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I also developed fibro after a car accident and same injuries you describe. It really changed my life this event. Is baclofen not helping your leg restlesness? It works with me, I find much harder to find what works with pain, specially my neck, shoulders, trappezium the muscle that surrounds the neck and shoulders and my right groin since a few months now. The rest of my pains move about, come and go almost every else in my body, lower back of ourse, toes, feet, finger tips, fingers, hip, hands and so on. For what i haven't found anything that works is for my extreme fatigue, which is really depressing me. I'm strugglig with my stomach really bad too, I keep getting infections all the time as well, which makes my existence unberable.

In july is finally my trial, if any, don't know how this is going to help but I am sure i'll find out soon. All the best, keep calm xxxx

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Ok, firstly, i want to say a huge thank you to those of you who have offered positive advice and (((soft hugs)))) as well as understanding. I feel it to when i read though other peoples blogs.

Smily, yep used to take Baclofen 10mg x 3 daily. This is one of the tablets my pain consultant has prescribed me in the past.

Bless him,his view of what to do when the spasms kicks in, whether its the neck, back or shoulders and arms he said, 'throw all you've got at it. Get the Baclofen 30mg x 3 daily, paracetamol or if needed co codamol, ibuprofen 50mg 1 x 3 daily then the amitryptaline, sertaline...and the list goes on. Then I start to rattle and become this comatose mess. Its as painful for my family seeing how low i can get. Thats where the depression then kicks in and you go down & down the downward spiral again. So, foolish me, starts to research into whether these tablets are safe to take all together...and that little bit of info can scare you into stopping them all!!!

Following on from lasts nights late first blog, this morning when i woke, i felt i had lifted a huge weight off my shoulders by venting some of the hatred i have built up inside for this condition. I spewed my heart out and moaned to you all, and i am sorry...you jest start to write and become consumed by it and i was all geared up to go into work this morning and go head on straight in for a battle.

As i parked my car in my 'disabled 'bay and displayed the only thing i have been successful in getting this recognised, i met 3 of my HR staff in the space of 1 min. I got inside, made my up to get a coffee, and was asked to pop in and see my HR manager.

I was blown away by how genuinely mortified, she was that i had been side tracked and said she really didn't know how it had happened. All i need to do now is supply them with proof, one of my letter(s) from the pain consultants. So now i am cheekily going to ask if they would consider back dating me last years pay rises that i was omitted from.

The HR manager advised me that they had a report from companies private medical assessment i had whilst i waited for surgery on my neck. It confirmed then, that this was going to be an ongoing lifelong problem and that was proven in 2011.

So GREAT NEWS....Its not the amount of payrise, because its only £17 per month (pathetic really) but i have a little bit of self worth back for my hard work.:-)

I hope i have caught up with all of u who managed to read thru my blubber....take care and thank you all :-)

I have to go..the dinners burning again lol xx

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