A positive mummy of 2 with Fibromyalgia who like everyone has bad days but has also found ways to stay positive and get the better of pain!

HI everyone

I am Vic, a mummy of a little girl who is 4 and a little boy who is 1 and I have been diagnosed with FMS for 5 years after being wrongly diagnosed with early menopause.

I am quite a positive person so if you want positive chats then please get in touch with me as I think half the battle with this illness is PMA, it gets me a really long way !

I am on hourly morphine patches (which are amazing ) and have severe overall pain especially in my back where i have scoliosis and in the bottom of my back in the pelvis area as well as not being able to use my hands brilliantly with gripping and chronic fatigue.

In the mornings when i awake and cant move, i take a while to stretch everything out one by one, yes it hurts ALOT but i have to do it! I cant even grab my duvet to pull it off myself until this is done. I start with hands then move from head to toe. I then have to get out of bed to get the kids up and Abigail to school each day so push through the pain and walk 1.8 miles to drop her off. Its not easy and some days i have to really push myself but once I am home I feel great and ready for my day with my 1 year old. I then repeat it at 3pm to pick her up. I do it even in the rain as if i miss a day out, I struggle to move for the rest of the day and following days!

Life is limited, i cant play with my kids on the floor like i want too, i cant clean my house like i want too but its clean enough and tidy enough as my husband really helps. I would love to do so much more but i have to accept I cant which is easier said than done as I am a musician and have had to give up as a professional swing and jazz band lead trumpet which is heartbreaking.

I sleep when my baby does (which isnt long) but have to or I dont get through my day so being able to work is a no no as no one will hire me needing a nap in the day and with the random flare ups I have! THat does get me down ALOT as i am an active person and want to be as "Normal" as possible.

Anyway what i want to say is yes I have the same struggles as most but if you can get yourself into the position to work through and push through the pain then you really must. I was bed bound for 6 months so i know how bad FMS is, but i also walked up an Ice mountain Volcano in Iceland for my honeymoon to prove that I could and wasnt going to let FMS beat me and take over my life! Granted i was in bed for 2 months after but I still did it :)

I beg you all to please try walking, start slow and work your way up as its my saviour. Plus i lost 4 1/2 stone doing it which has really helped with my knee, ankle and feet pain problems!

Big hugs to those in agony, but please try little walks and often and i promise you it will work :)

I always said "yeah right" to the doctors when they said exersise helps, but it actually really does. I dont mean swimming, or boxing or cardiovascular activity as thats crazy but walking is amazing !

I really hope there are many others out there that want to be positive and havent given in to this awful illness as its so possible to get on that slippery slope. I am on it alot, but I have also learnt to pull myself back up again! I had to to be allowed to have my 2nd child and he is the best thing in the world and really glad i did it even though its really hard most of the time picking him up and being able to chase after him etc, but I have adapted to the life I need to lead with him (with bad days here and there)

Please dont reply with mad or nasty emails as i am aware people take offence to my way of thinking and I really dont want to recieve any. I have just returned to support groups after appauling responses from many Fibro suffers just because I am positive - I need support too, I too am in severe pain, I just try to live life as full as I can to stay focused and happy! It could be so much worse x !

10 Replies

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  • Hey Vic, gentle hugs. Firstly, I doubt anyone will be nasty to you in any way at all - For one thing that would be breaking the rules and 2nd, every one, as I would, will applaud you for you positivity. However, I was a young mother like you, positive, like you, and full of energy and able to walk anywhere and everywhere. But the years have passed - I've turned 50 (back December) and have been full of Fibro and suffering PTSD for well over 30 years - but only diagnosed about 7 years ago. Now I cannot walk without a stick, and only a short way - as walking now makes things much worse. Fibro affects us all in different ways and after the years it's been attacking my body, I will get much worse no matter what I try do to slow it down. I am on my own and struggle to get out of bed as arthritis is doing a number on my old joints. I'm a very stubborn and proud woman, and find it hard admitting how hard I'm finding getting through each day. Am even worse at asking for help and worse still when it's offered and I constantly turn help down.

    With the PTSD, I suffer dreadful panic attacks once I am out of my house - and only leave home when I truly need to.

    So many life events, really horrific events from as young as 4, I have survived and remained positive, happy and looked forward to each day of the future before me. I've not exactly given up on living - Though I've thought about it - Thanks to Mr Fibro - But I've a 10 month old Grandson who's the light of my life and I remain as positive as possible for his and his mummy and daddy's sakes. As well as trying to remain positive for my own sake. But there are days when every ailment I have seems to want to attack me and misery is my best friend for long stints of time.

    All us Fibromites have been through so much, and for us older ones, at times it can be extremely hard to remain positive, knowing there's no cure.

    Long may you have the ability to walk as you do, and remain so positive and happy.

    Love,

    Carol xx

  • Hi Vic, please dont think people on here would be nasty to you, ive never seen anyone do that we are all in the same boat and no one on this site is like that....they are all lovely people. I think you are amazing and i applaud your positive attitude, i wish i could find some of that myself sometimes! I too like you have started walking my little girl to school instead of driving and some days it really is a struggle but i take my dog with me and we wonder home at my own pace and we all feel better for the walk (mentally not physically lol!) You say you have a 1 year old...wow! I wouldnt have the energy any more but good on you for doing all that you do! You mentioned that you are on morphine patches....are they for the fibro? Also you said that you have knee, feet and ankle pain, i have sever pain in my knees, some days i could sink to the floor and sob with the pain but if i did i wouldnt be able to get back up again! My rheummy has referred me for physio for my knees to see if that will help..have you had physio? Anyway...enough of my ramblings, you are an indpiration to others and long may your attitude continue....gentle hugs x

  • Glad you have such a possitive outlook Vic. I too refuse to let FMS get the better of me. I still do a lot of DIY, but just this last month have had to admit defeat with some aspects of a large garden project I have planned. Even so it was torture letting someone else do what a year earlier I wouldn't have dreamed of having someone else do. Also thought that getting up a ladder to paint my guttering was a bit too ambitious for the arms and shoulders now!! Damn it!!!! However I too walk, my little Boxer pup is now not so little. 10mths old and needs her daily walks. So I really have to do that. I still work 5 mornings a week. last year I worked 5 full days. And so it goes on, but I still refuse to acknowledge IT! Contrary to some advice I know. But I couldn't get on with the'Pacing' and am still on the 'Boom & Bust' part of the cycle. Don't know if I will ever learn to 'Pace', but hey, we are all different and some much more affected than others. For me that is the scary bit. Looking back and seeing that it has progressed, without me realising it some times.

    I too suffer panic attacks Candee. I will be 61 this year, and with a resident grandson of 15 and 9 other grandchildren to keep me on my toes I really can't give in. Also very proud and stubbon. I hate asking for help and even when offered I hear myself saying, "No I can manage thank you". I brought up 5 children as a single parent after my husband had to go into 24/7 care with MS. Then I was treated for RA for years. But I just will NOT give in. Could be we are our own worse enemies, but we all deal with life differently. It would be a very poor place if we were all the same!!

    So, good luck to all who stay possitive and stubbonly keep going, but also gentle thoughts to all who need to take a different path.

    Best wishes to all. Sue x

  • I think like you my fibro was only diagnosed last year so pacing is a art I am learning, I still do the mad things but then pay the price ! I sort of think while I can I will because I feel this is a progressive illness. I have been referee to hydro which will be my starting point for fitness and I have been on a courses for pain management next is a dietician course. At 46 this is my chance to go for it and move my life in a positive direction.

    My children have grown up so me time.

    Thank you for the positive post and I try and bad days I say hey go be misrsble today but get back on it tomorrow x

  • Like Penny I am newly diagnose and in many ways cant get my head around it. I cannot do the Pace thing either as I am still boom and bust. Most weeks I am only able to manage my job which is full time, but at home. It still takes up all my time and I dont know what I would do if I had to travel every day on public transport to get there as the journey is long and always has problems. I am trying to keep positive too and admire all of you that I have read the blogs of on this site. Some of you suffer so much and yet still find a kind word or thought for others.

    Vic's attitude is the only one to take if you have small children. They are loving, wonderful, HARD 24/7 work :) Mine are now teenagers and thankfully can do some stuff for themselves.

    Age is certainly relevant as mny of us naturally slow down with age but I now find myself fearing this condition becoming worse and that frightens me to be honest.

    I guess we will all fight it as well as we can and accept some days are just gone to be bad and go with the flow.

    I am having a stange fog filled day (like a hangover without the initial fun), so will try and go out with the dog later for a walk to blow it away

    gentle hugs to all

    x :)

  • Hi all i am so sorry i have read all your replies but been so busy i havent been able to get on here to respond :( firstly thankyou all so so much how amazing to finally find like minded people hurray :) Secondly when i get 2 mins to sit at my laptop i will reply individually to all your comments as i think each and everyone deserves that :)

    For now i will tell you why i am so busy !!!!! lol

    Well i had a really bad flare up, woke up paralysed and scared beyond belief! first time in 5 years of this condition its ever happened and thank god hubby was here ( as he is away alot) and squirted oral morphine into my mouth so i could move :( even swallowing hurt, honestly i freaked out but touch wood it hasnt happened since! which leads me onto my usual coping mechanism....back to work i go lol and plan to climb mount snowdon next year taking a massage therapist and trainer with me! i have to laugh in the face of my illness as my down days are getting too far down so up the ladder i go :)

    Also i have the best job ever, headhunted to head up fundraising and event management for Camelia Botnar Childrens Charity which is a preschool free of harge for Chdren with Special needs from severely disabled to Autism and their siblings! omg i just love it :) my daughter was born with Spina Bifida and had major spinal surgery at 8 months so i started a charity Parley Online to get me through it and Camelia headhunted me from that into a paid job hurrah 15 hours a week! i have been arranged 6 huge events 2 which have happened and 4 before November this year sooooooo excited and wont bore you with the details! But my god spending time with the kidsthere helps me to not dwell so much as lifecould be worse. My fibro is worse but hoping oncei am used to it in s better non summer holiday routine and the weather stabilises a bit more i will feel better :)

    I had a reading done too from a lady that i saw 9 years ago and predicted my life 99% of what it is today and she said if i keep up my positive attitude i wont end up wheelchair bound so i hold on to that :)

    We all have to believe in something :)

    So Snowdonhere we come cant wait :) i am raising fibro awareness PR styly and raising money for our local Special Care Baby Unit as my friend had her bubby 29 weeks and she is now a perfect little 6 week old just come home :)

    Anyway enough of my rambling too just wanted to update you of why i have been awol!

    Hope the weather wherever you are isnt effecting you all too much?

    Gentle hugs from me down South

    love Vic

    ps apologies spelling mistakes am pn my phone lol x

  • Hi Vic, what you wrote touched my heart. I know what it must have meant to give up professional trumpet playing. I used to play lead trumpet in big band as well as played in a brass quintet, Dixieland band, and a New Orleans style brass band, taught trumpet at a community university conservatory, took lessons for two years in NYC, in addition to working a full-time job in PA. Six months after I moved to NYC, I was diagnosed with fibromyalgia (bad case of it). That was over 7 year ago. I have been playing trumpet again for about one week and am definitely feeling better with increased energy. I am doing better with Dr. Teitelbaum's SHINE protocol. There is hope! I hope that you can play trumpet again and thinking and being positive I am sure that you will. It does help to be positive! Take care. I will you all of the best!

  • Hi Vic,

    I know that you can get better. I want you to know that it is possible. I've continued with Dr. Teitlebaum's SHINE protocol and have been on it for two years. Find a practitioner from Dr. T's website and get his book. In addition to my full-time job and several hours of commuting each day, cooking, cleaning, doing laundry, going to church about every week, I have been able to practice trumpet for about 2 1/2 hours every night and I am taking trumpet lessons in Brooklyn. My teacher said that I am about ready to go back to lead trumpet playing again with a big band. I've rebuilt my lips again for the past 1 1/2 years and took a lesson with Laurie Frink in NYC. I use her routine daily. I decided to ease back into performances by being a soloist at church. However, I am now playing out of lead trumpet books, such as Basie and Thad Jones as well as some buddy Rich and Kenton charts.

    There is more than hope for you. There is a solution to feeling better with less pain and fatigue. Feel free to ask me exactly what helped me out.

    Blessings,

    Janell

  • Hi Janell

    You have done fantastically well and I just want to congratulate you from the bottom of my heart!

    It so so wonderfull to read a story when hard work application wins through :)

    Keep going!

    xxgins

  • Hi Gins,

    Thanks so much! It means a lot to me.

    Take care.

    Hugs,

    Janell

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