Forever Flare Up ..

[charlie_red]

I have been reading a lot about people getting 'flare ups' but I find it hard to pin point many occasions where I have had a 'flare up' - I feel like I am in a forever flare up, with pain that is beyond belief :((

[Aisha]

Hello charlie_red, I agree with you I don't know what a flare up is as I'm always in pain somewhere on my body! What medication are you on? Aisha x

[charlie_red in reply to Aisha]

Hi Aisha,

I'm taking Gabapentin 300mg three times a day, Duloxetine in the evening, Paracetamol & 10mg of Morphine 4 times a day. What about you?

C x

[Jackieblu]

Hi Charlie yeah it's a strange one but don't you think it depends what your pain threshold Is too? i find that depending on the time of the month I feel pain more and I'm very sensitive to just everyday living! I've just been through a chronic pain management prog and its left me very confused,they've told us its all to do with the brain where it's sending too much signals down into your muscles and joints! They have tried to give us coping strategies and various tips and techniques to stop your brain from basically going into overdrive! I just feel pain all the time but they told us not to push through your pain,pace your activities but realistically you can't do that all the time, nothing would get done,you would be chasing your tail half the time!

[Mad4it1966 in reply to Jackieblu]

I too have just attended a seminar like this. I agree with you totally too. I dont ever get a break from fibro and because of this I do not know what a flare up is either.

[Jackieblu in reply to Mad4it1966]

Hi Mad4it1966 this was my second pain prog I've been on in the ten years I've had Fibro,I did enjoy goin to them and have made some good friends but did find I was confused at times! How did you feel after yours? Jx

[charlie_red in reply to Jackieblu]

Hello Jackieblu,

Yeah I think pain threshold has something to do with it too, I have been trying to grit my teeth and bare it at times, as I often feel I need to hide my pain. I have been on a chronic pain management course at my pain clinic, and like you I found it a little confusing at times .. Especially the idea of 'pacing' which they really suggested for me but with uni, trying to work etc. it's rarely possible - I would get nothing done!

Hope you've had a good weekend, C x

[Petra]

Hi Aisha I am so sorry that you seem to be in a continuous "flare".I have had Fibromyalgia for 6 years.I went to America and flew back by plane and had a cold likemost people do as you are breathing in everyone elses breath.I developed pleurisy and from that the virus gave me Fibromyalgia.I just thought that it was Rhuematism and I was 60 at the time but this felt different.I myself have found that any stress is a "trigger" and your body tenses up and then the flare up begins.Our brains transmitters are highly sensitive and that is why we experience what we do.The symptons are many most of which are extremely unpleasant.PACE is the magic word Pick A Chore Everyday if you can don't overdo it and push yourself.Read, watch the TV or listen to music to take your mind off the pain.Picture a beautiful wood, with trees and the sun shining through them and the noise of the leaves.As you are walking through a gate you find a box, open that box and offload all your pain and trobles worries and close the lid.Continue to walk on trying to breathe properly and relax.This is not physically done it is guided imagery.I went on an NHS course for 6 weeks Expert Patients Information Course (free) a doctor referral.We covered everything for various ailments, drugs, diet, our backgrounds, what we were having to cope with our families.We all on this are learning from eachother everyday and that is what is so nice.To share with people our experiences and help us get through our "new life".I send you the most gentle hugs and also to everyone on this blog.I myself am ok having, sadly lost my husband of 43 years on the 17th June 2013.I have so many friends supporting me, and my husband has gone to a better place than this terrible world we live in now.Don't be sad.He lived his life to the full having had a growth which was not cancerous, a heart attack in 2009 and now his heart muscle just failed.I managed to do CPR before the paramedics arrived and so did my neighbour.He suffered no pain.It was meant to be.I have very strong support from my two children and am absolutely fine andhave got everything sorted.Strangely my Fibro is slightly better as I am not constantly worrying about my husband.Take care Aisha.Keep on this blog we all help eachother.Kind wishes to Very Grumpy Ladymoth and everyone else.XXX

[Ginsing in reply to Petra]

Petra my condolences to you from your blog you are managing and seem at peace with all that has happened. So I send you a loving hug ay all your days by gentle and full of love xgins

[shopaholic in reply to Petra]

Just sending you my thoughts after reading your letter....i cant help butfeel sad u have lost ur dear husband but i feel your strength is remarkable,im so glad ur fibro is a bit better and hpoe it continues to get better for you....sending you a hug and xxxxxxxxxxs to a lovely strong lady xxx

[Lucyw]

Hi Petra,

I just had to write to you.

I found your story totally gripping from your experience of the group and of how to try to relax etc. I am wishing you a long and healthy life (this is what we say in my religion) when someone passes on. You seem very calm and in control thank you for sharing it with us all.

Lucy

[Tannels]

Hi Petra, you story really touched my heart. I lost my only sister a couple of months ago and still have days when it gets to me, but I carry on, as we all do and try to count my blessings. You are dealing with all of this very well. Thank you for sharing this with us all.

Gentle hugs

Tannels xx

[starblaze]

Hi Petra,

Your whole blog was amazing, informative, caring and so so touching!

God bless you & your wonderful husband of 43 years! A real achievement these days to be married at all,let alone 43 years. You must have wonderful friends around you.

Thank you for sharing that with us. X

[Sandy247]

Hi Charlie-Red, I take a lot of morphine and other medication daily which reduce my pain to an acceptable level however, sometimes things don't go according to plan and suddenly I am screaming in agony as pain envelops my whole body - even though I have lots of medication inside me. This is a flare up. It's horrible and can last for hours. I hope you never experience one but if you do I found that having a 'Happy Box' to hand helpful. A 'Happy Box' is a box [obviously] in which I have DVDs and anything else that makes me laugh/bring back happy memories. As soon as I've taken some Oramorph and the pain starts to subside I watch /look at the things in my Happy Box which takes my mind off the pain. Laughing also releases endorphins, the body's natural feel-good chemicals, which promote an overall sense of well-being and help reduce the pain too. I hope you find this helpful. S x

[vajrayogin1]

Reading your blog Petra was so uplifting, your acceptance and love came across so very clearly.

We all have the capacity to manage pain, somehow there is an innate tendency to find what suits our uniqueness what works for one person doesn't work for another. Laughter of course is well known to help. I also do meditation focusing on the breath, breathing in imagining my whole body being filled with purifying healing light on the out breath is carried my pain anxieties and worries. This exercise can be done anywhere you don't need to be in the classic meditation posture.

A happy box, what a great idea!

[haribo36]

Hi Charlie red and all of us who seem to be in a continuous pain flare.Just thought I'd share and hope Iam allowed to do this,a site you can go online where you can read about coping strategies and pain flare up plans etc..I won't give you the website as I don't think Iam allowed to do that but if you google jan Sadler then Iam sure the site will come up.Its for everyone who has chronic pain and you can get lots of info there.I haven't been on it for a long time so think I will visit it myself.Gentle hugs x

[shopaholic]

Hi everyone..there is no doubt petras story has touched us all....god blessher and all of us suffering this awful fibro xxxxxx

[happycroc]

Hi fibro pees, I have to just let you all know that on a normal day , although in pain, I can do most things.. I it has taken me many years to understand my limitations but on the whole i tough it out.... However I am and have been in the worst flare i have ever known.... there is not muscleht is not burning in pain.. I am crying with the the pain in my skin. just siititing laying down or my pj's touching, my skin is o fire.. I have not been able to move with out the constant help of friends.... I have not one once of energy, i have the curtains closed due to the light hurting my eyes.... i feel like curling p and sleeping .. forever.. but we plough on and keep going .. because we are all very strong men and women who believe that one day science will prevail and find one pill that will stop all this pain xxx I hope you all feel better soon and gentle hugs to you all xxxx

[lcm27 in reply to happycroc]

Hi happycroc, I am also like you, there is never aminute when I'm not in pain but flareups are horrendous. I understand and know the feeling of not being able to have a hug, cos it hurts so much, or take a shower cos the water is like daggers hitting your skin, not wanting to get dressed cos clothes hurt and my dressing gown is much softer than clothes. I too haven't had a proper nights sleep for the last 13 years but as you say we plough on, the meals get cooked sort of, the washing eventually gets done and the housework and shopping is on an as and when basis. I also am optimistic that one day someone will have a lightbulb moment and discover something to massively help us, I'll try anything once. Having got suicidal at one stage the shrink suggested canabis, I've a cousin with MS and would have suggested her but didn't think about me. However having found some good clean stuff I ended up so spaced out and only pain free for max 2 hours I gave it up, my GP said if it was in tablet form he'd prescribe it for certain things.

Keep positive, you know the flare up will lessen even if it doesn't totally go, use the days to indulge yourself in doing things you normally wouldnt have the time to do. Even a pedicure or gentle foot massage. It took me years to learn to love myself for me, the shrinks in my area are very keen for chronic depressives and long term pain sufferers to craft in some way. It helps keep your mind occupied and helps eye/hand cognitivity, plus you can pick it up and put it down whenever you want. It has been my saviour. My hubby hated it at first but having now retired he sees how much daily pain I am in and my limitations, so he now helps more and doesn't mutter when he sees me crafting, even giving the occasional 'wow thats good' when I've done something. More importantly I've learnt to be selfish and say NO, my hubby is a great organiser and would have me doing stuff I wouldn't dream of, so every now and again my foot goes down and I refuse to go anywhere. I feel extremely guilty when I say no but I know in the long term its less damaging than overpushing myself.

Gentle love to everyone, cos not everyone can take hugs xx

[happycroc in reply to lcm27]

Thank your so very much for your kind words... todya is a little easier , though i have been given diazapm for a week and sleepers for a week in a bid to get mY body on and even keel once more.. I have taken to my bed toay for complete rest, as Tomorr ow my son's 21st B/day.. and we have huge celebrations and party organised..... I hope you are sowmewhat pain free ... gentle and spiritual healing love xx

[Hidden]

Poor you.

I was in agony from October last year until April this year without a break! I finally saw a few good days when I went away to Skye on holiday with my family. Just being away from it all and getting fresh air and a change of scenery was great. I felt good for a whole week but flared up again as soon as I got home! But it made me realise that if I can relax and de-stress it IS possible to feel better. Then I really got focussed on pacing myself and forcing myself to rest. I found / find it really hard but it works. It's like we're being selfish and lazy if we just sit about. But we must! I do activities in the morning (whether work or kids or volunteer work) then I REST after lunch and then I have JUST enough energy to do things with kids and make dinner before I go back to bed again! But I'm happy for now that I've found a level I can function at. Even hopeful that one day I might just get rid of this illness!

Good luck!

Win

[Petra]

Hi there everyone, This is Petra thank you all so much for your kind condolences I really do appreciate you taking the time.Just wanted to share something else that happened yesterday.I was getting the washing off the line and I heard a cooing - thought it was just wood pigeons BUT when I looked up there were two white doves on my roof...arghhh I thought one for me and one for my two children.Was that a message from above I would like to think so.Also a small balloon has landed in my garden with a ticket from a school in Nottingham.Whichever balloon gets the furthest, wins a European holiday for 2.My daughter bought a Euromillions lottery ticket for me, I was one number out on each of the five numbers and had lucky star arghhh.Its only money but it sure would be most useful right now.Take care and gentle hugs for everyone whether suffering or in remission.

[Fibroman]

Once you have lived with fibro for long enough you will recognize what a flare up is. When we first get fibro it seem's you are on a permanent flare up. This is all down to you and your stress level's as a lady mentioned before, taking a break and relaxing reduces pain, doesn't ever go it goes up and down like a roller coaster. I found i needed to reduce my stress level's and found playing MMO's is my way of escaping. You need to find your's or be stuck in a permanent state of stress and pain. You may not be able to destress yet, this can take years. I had to lose my business , home and wife before i finally found stress free enviroment.

Not suggesting you go to this extreme but if you cant relax or distract yourself then you are on a constant flare up. Also found anti-depressants work wonders if you give it time and can live with the stigma. I tried to quit them just after xmas for 3 months and almost ended up killing myself because of the anxiety and pain.