I read the blogs on here and empathise with so many of you. I suffered with what was thought to be Rhumatoid Arthritis for about 5/6 years before my final diognosis in June 2011 of Fibro. Don't know if it was the stress of a Carpal Tunnel op and then being made redundant made the symptoms of Fibro move up another level. I have found another job.Part time.(I'm a Pre school Educator!! i.e work in a pre school!) But definately my health has gone down hill this last year. It was reading the blogs this morning about washing hair. I too suffer most with my neck shoulders, upper back and arms. I also have Cervical Spondulosis. At the moment I do still manage to get in and out the bath.Painfully! I do still manage to shampoo my hair. It is very short now as holding a hair dryer to blow dry it went out the window months ago. So definately things are getting worse. But my question is?? Yes getting there!! How quickly have others found it has progressed? Is there a trigger that seems to suddenly mean you can't do this week what you did last? Is it quick or gradual? I also read how so many of you can't now walk far or need wheel chairs? In your experiences was this a quick progression? Or just slowly over many years?
Maybe it's like MS? My husband had a very agressive form of that and within 2 years of first being ill he went from needing 1 stick, to 2 sticks to a wheel chair. He has had MS for nearly 30 years now and has been in a nursing home, needing 24/7 care for the last 26 years.
I refuse to give in to this 'THING' but as I have definately seen a marked difference in my health and capabilities in just a year, it frightens me to think that in a short time I could be dependant on disability aids. I have just my 15year old grandson living with me full time now, but like all 15 year old lads is not at all sympathetic with anyone elses needs.
Sorry, another rambling blog.But I just wonder if Fibro follows a given pattern and in X number of years everyone finds they are totally dependant on sticks or wheels? I still drive at the moment, but have to be up for at least 2hours before I feel well enough to get behind the wheel. Hope I haven't depressed you all. Done a good job of depressing myself today! XXX
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suejayjay
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im so sorry to hear about your husband and yourself xx i from what ive read up on think that fibro seems to pick whenever it wants to strike ? my triggers are definately stress i find even the tiniest amount and bang! im like you too with the cervical spondylitis and also other things like others it seems , i think its a horrible thing to have but the worst is when your not understood i say to friends now oh just google it!!! cant be bothered when they say i look well! lol! the same also if i want to go anywhere it takes me a good couple of hours to move in the morning! im only 48 and feel as crippled as 88!! but like you i refuse to give in and thats not a punn at anyone else btw who unfortunately has to rely on aids it actually makes me wonder the same does it come to that whether you like it or not? i cant work or i could if i had a job that lets me come in when i can ! thats why i lost my job sickness so now i dont but dont be deppressed i hope the sun is shining today where you are ?? have a lovely day and get somesunshine that help cheer you hugs alexandra x
Thank you Alexandra. I think it's the 2 hour morning bit that really gets me down. No way could I leap out of bed and rush of to any emergancy that the children might have.As I always used to. It takes me a good 2 hrs too. That is why I have to get up at 6am every morning to be out of the house just after 8am for work!
Lovely day here too. Hope to do some jobs in the garden. I am on school holidays at the moment, so am doing the worst thing the pain clinic warned me of and Booming and Busting, but hey, I have 6 weeks to work it all out and hopefully be rested enough to start my last year of work in September. Have a good day and enjoy the sun where you are. X
Fibro is not a progressive illness. It is a fluctuating condition. It can go into remission for periods of time but will not go away. Like you i have had it 5 years,since i had my daughter and a traumatic labour(i nearly died).I was also diagnosed June 2011. I had been fighting it for so long as the drs kept telling me it was depression and i was bound to be tired with 2 small children and a disabled husband. What i should have been doing,had i known it was fibro,was accepting all the help i could and resting as much as possible. The longer you try to fight it the more likely you will end up far worse. I now use an electric wheelchair when out so i can reserve my energy for important things like playing with my children. My house is a tip but my chldren are happy and well adjusted.I choose to use it. I can walk but its very painfull and it will wipe me out for several days.I have lernt my lesson from friends who have tried to fight it and carry on as before,they have ended up bed bound. One of them was bed bound for 5 years. I couldnt do that to my children so i use every labour saving gismo that i can.On bad days my 5yr old washes and brushes my hair,she loves playing hairdressers. Tell as many friends and family what you have and how it effects you so they can help you. It soon sorts your real friends from the fair weather ones.
The more you listen to your body the better chance you have of having your health improve. Stress plays a big part,the more stressed you are the worse you will feel.Is not all bad. Ive learnt to make the best of my energy and time. I have no time now for the negative things,i dont need them in my life. I cant work anymore so my children see much more of me than their friends do. I go to sports days,plays,i even volunteer to read with the class. My house may be messy and have dust on the ornaments but my 5 year old has the reading age of 7,my 3yr old knows his alphabet and is starting to read aswell. Our children are caring and well behaved. I have 3 voluntry jobs and do youth work at our church,all of which i do depending on my health.If i know i have something comming up that will tax me i schedule in rest days before and after.I helped run a camp for 25 nine to eighteen year olds last week so this week im just pottering about with the children at home and i did the same the week before. When i was busy working i was tired ,irritable, in pain and not a nice person to be around. Im much more laid back now.
I hope that helps. Please do remember though that we are all different. Our support group has lots of members and we all deal with our illness differently. We take different medication and we have different symptoms but we all experience pain and fatigue. We all respond well to looking after our selves.Accept you are disabled and that its not all in your head. Accept any help you can.Enjoy some ME time.By looking after you you will prolong the good times and lessen the bad.Try new things that may help,keep an open mind. You are worth it. xxx
i broke down SOBBING, right after reading your above response to the posted question! I've felt so guilty for being weak, not being able to do all the things I used to for my family...I'll get frustrated with a dirty living room, put too much effort into cleaning it, then barely be able to get out of bed for a couple of days - i really did not know other people got knocked out like that, i thought I was being a baby - and I've always been really tough and independent, often to a fault. I continued reading other replies, and would catch myself talking out loud to the screen, "Omigosh, it takes them two hours to get movin' around in the morning, too - just like me!" i stumbled upon this little forum today, and am so relieved to find others who understand these challenges... I feel like my husband is disgusted with me, because I've gone from active to mostly lethargic, and it takes me hours to get out the door to go anywhere. i don't think he believes this condition to be real, and that if I just got out and walked/ran regularly, I'd feel better. My condition has worsened SO much over the past year, and I seriously believe he thinks I'm making it up to be dramatic and lazy. I can feel him rolling his eyes at me... He never offers comfort - no massage or rub of sore/tender areas, never speaks of any empathy, never shows any visible signs of concern - I don't think he thinks it's real! I'm gonna send him some info from this site,as well as others I've found, and see if it helps validate the illness, in his mind...
One question, Cheryl - with all you do in your volunteer jobs and such, how do you get up and get ready, get to them on time? That's been one of the biggest, scariest, most frustrating challenges for me!
Thank you so much Cheryl.You seem to have a very full and varied life. I suppose I have always been the one to do everything for myself and others. Was always told I was TOO independant when my husband was ill and still at home. But that's just my nature! "I'll do it" was always my mantra. Also I am a bit OCD. "Only I can do it the right way!" I know I must change and also get my family to understand how it is. I have 5 children. 35,34,31 29 & 27 and 10 grandchildren. But I have always been the one to 'DO IT ALL' Literally!! As I don't look that much different, I think they all see me as just the same as always and I feel a bit embarassed to admit I can't actually DO IT ALL. Take care and thanks again for your lovely reply. XX
Hi, really sorry to read about your husband and your problems.....this is my experience of fibro. I have had fibro for over 20 years and managed to work full time have a child and be really active swimming cycling driving. The only problem I had was occasional flare ups of chostocondritis .. Painful ribs couldn't wear a bra ... But took strong painkillers and it went away after a few days... For me it was getting diagnosed with arthritis than came on literally over night and in three months had gone from super mum to being in a wheel chair ... Have got better slowly but can't exercise anywhere near as much and that's when fibro got a hold really bad . I am convinced exercise does help fibro but I am severely limited as cant turn my neck right my ankle and knee give way at any time. I can't hold anything heavy have arthritis in both hands cant drive... Have a mobility scooter, but if I hadn't got arthritis no idea why it sudenly apeared without warning at age 43 i think I would be a healthy fibro mite... I remember when I was diagnosed all those years ago and my dr told me to join the local support group and slow down.. I laughed ... It really wasn't that much of a problem .... Ahh now it's we'll and truly caught up with me ... I am just thankful I was lucky enough to have it so mild for all those years
Take care x
Hello Suejayjay, so sorry to hear of your problems at the moment. Regarding Fibromyalgia being progressive, I have found even on medical sites opinions are mixed, some say it is, some say it isn't progressive. The people to really ask are the people who have Fibromyalgia, I have posted a link discussing Fibromyalgia progression in this forum, so you will see some personal viewpoints.
Speaking personally, whilst in some areas I have definitely seen a decline in me, there are other areas where I am much better. It's really confusing isn't it. People with Fibromyalgia can go into remission where they are symptom free, but they can also worsen. It's a real mixed bag.
as suggested by others you need to talk with people with fibro and the best place for that is at a support group. i joined one just over a year ago .I've lived with fibro since 1985 which has been at varying degrees during that time. the group has helped and taught me so much that i really don't know where i would be now without them. simple exercises, stretching etc yoga, tai chi, water supported movements, they must not be dismissed as being helpful. they have helped me be more mobile. also diet helps immensely. there is a diet, this is not a diet for weight reduction, although some people do lose weight following it. it is called "Eat Right For Your Type" and it works by eating the right type of food for Your blood type. certain food we eat, although not allergic to it,can aggravate certain disorders, one being fibro . i would certainly advise you to look into this and try it. i follow it almost to the latter and yes, i have lost weight BUT the best changes are that some days, more than less, i feel normal. not everyone will see results as positive depending on how bad they are before they start. BUT even to see and feel some change for the good has got to be a plus. also keep OFF sweetners, especially ASPARTAME (E951) ,and MSG . Aspartame causes MS like symptoms which are also fibro symptoms. I CANNOT STRESS HOW IMPORTANT IS THAT YOU DO LOOK AT DIET AS BEING ONE OF THE MAIN FACTORS INTO HELPING YOU WITH FIBRO SYMPTOMS. I have been studying allergies and intolerances as part of my work and have gone off at a tangent at one time to look in depth at diet and fibro. Fibro affects different people in different ways and at different levels. No two people with fibro are affected inthe same way. There is no natural or standard progression rate. situations that cause worry, stress or upset affect different people in different ways so the outcome of these is varies extremely. fibro can sit in the background , for months and in many cases, years and then suddenly flare up because of an incident that has caused stress or worry. He. a divorce, giving birth, a car crash, family disputes, illness of nor child, a fallout car with a friend. Almost situation can affect the onset of fibro. once there , the same things can aggravate it. Other aggravations are affected: weather too hot or too cold, damp or too dry, too much sleep or not enough, the list goes on.hope this has been helpful and i do hope you can find some relief and a way to handle YOUR fibro , because although it is a co edition that affects many, the way it affects YOU is unique. Take care.
Thank you for all your suggestions. I have been looking at my diet and found I am wheat intollerant. My IBS improved 100% when I stopped eating wheat products. I do cheat occassionally and pay but hey, life's too short to deny yourself everything. Also one of my daughter's has just been looking at a publication on food relating to blood groups. Again it said A, which I am, should avoid wheat. She was going to try it for her blood group, just out of interest, but she is O and it suggested a near vegiterian diet.! There is a lot in this" We are what we eat". Thanks again for taking the time to reply. Take care. X
Well acording to my fibro support group at hospital, (medicaly trained staff and councillers) Fibro is all in the persons conrtol and if I wanted to be paid free and free from fibromyalgia then I could. Needless to say I walked out of that situation after telling them I would love to work full time, dance like I used to and be totally well. Not my idear of fun being in constant paid and choosing if something I want to do is worth the pain I will suffer afterwards. I went to a birthday party last year and danced for hour and loved every minute of it. I was in bed for a week after and took over three months to get over it.
In the yesrs I have had fibro it has been mind and severe and I have found if I moderate my activities this helps a lot. I cry easily when I used to never cry and I get frustrated and depressed at times but the thing that most gets to me is when pesople assume I just enjoy being ill. I do not have a pity party and usually only i know how bad I am feeling and so this bugs me big time.
Trial and error are the only way to find what works for you and as soon as you have cracked that it changes. A positive attitude and a good sence of humour is what gets me through.
Oh, Devonlady, I do sympathise with you. I didn't find much joy when I went to the pain clinic run by the local hospital either. I was told it was my pain receptors stuck on 'high volume'!!!! I have always had a high pain threshold, and if the bruises I still get with no idea how I came by them, are anything to go by, I still have a high pain threshold! So I dismissed that theory! I used to do everything for myself re DIY, Garden, Decorating etc. Plus have a full time job in a Primary school. I did have pain and extreme tiredness, but put this down to Meningitis I contracted in 1998. After that my 'Rhumatoid Arthritis' seemed to get much worse. In 2009 I had several severe episodes of back & Neck problems on top of the usual RA pain & stiffness. Then in 2010 I had an op for carpal tunnel and was also made redundant. I in effect didn't work for about 9/10 months. I was diognosed as DEFINATELY NOT having RA but I did have Fibromyalgia. Thought at the time, fancy name for fobbing me off as it being "all in the mind"! However, I started new part time pre school job in September. I have really struggled this last year. Feel as if I have got my new job under false pretenses, as wasn't half as bad as I seem to be now. More exhausted, more pain (if that is possible!) more prone to crying! I never used to cry and certainly NOT in my place of work. But seem to be so emotional now. Doesn't give good impression at all and have been pulled up over silly things at work and have then cried!!!! They must think they have employed a 'Fruit Cake'!! Every symptom I had, seems to be at least twice as bad as it was 2 years ago. Like you, I have no wish to be in pain. I have to work for this next year or I get no money. I have no husband to support me. But I dread this next year. I can see it being a real struggle, even tho, for me there will be light at the end of the tunnel, I have just 1 more year to struggle on. So, if in our minds and we can "change" how we feel, Why do I feel as if it has really got so much worse? Just when I needed to be on top of things and make a good impression in a new job did my body let me down?
I do think stress does play a part in how it is from day to day. But why if we are having a stress free episode, do the symptoms of Fibro not get better. In my experience, they get worse and even if some days are less painful than others. And some days I am not so tired, I never seem to go back to how I was on a good day, say a month ago. To my mind that is progressive. It might stay the same for a while. Even for months, but then once you have had a bad episode, flare up, it seems to stay at that level from there on? I am probably not making myself very clear, but I do really fear it "progressing" until I am like some others on this site, who seem to be reliant on sticks and wheelcahirs and even some days bed bound. Thank you for taking the time to reply and giving me your experiences. I do try and stay possitive and most days try and block IT and the pain out of my mind. Denial as the pain clinic told me. Yes, most probably, but I have to keep going because I fear if I stop for too long I might not get going again!! XX
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but dont be deppressed i hope the sun is shining today where you are ?? have a lovely day and get somesunshine that help cheer you hugs alexandra x
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