please explain what fibromyalgia will mean for me

[chaplinsbabe]

I need some advice please.

Today I was diagnosed by my GP as having fibromyalgia - I am 27 years of age.

I had an accident at work back in May of this year where I ended up with whiplash injuries to my neck which affect my back,left arm and left leg. I had to return to work in spetember due to the fact work had cut my pay to statutory sick and I couldnt afford to live. Being off work had also caused me to sink into depression again as I was being forced to be at home all the time with my children the youngest of whom has cerebal palsy and I was finding it very hard to look after him.

Knowing this and despite my GP,physiotherapist and a doctor from works occupational health all saying that I was only able to perform light duties (i work for the ambulance service) work said if I really needed to get back to be paid a proper wage again I had to go back and do my full duties - they were very unaccommodating to my condition.

Since being back at work the sorts of things I do - moving and handling,driving etc - have made the pains in my neck worse - it hurts just to sit here now and type this. It has also again affected me being able to care for my son and do daily household chores. I have a numbness in my left arm and my left foor feels like a dead weight which on some days I can only drag around when I walk. There is constant pain in my neck and my leg and arm.

So what does fibromyalgia mean and can it be cured? Im a bit uncertain but know it is very very painful and the doctor has given me amitiptilin to take to help me - is this effective? He has also referred me back to a physio and to see if I can get some accupuncture. Will I have this condition for the rest of my life though and can it be classed as a disability?

I am so scared to tell work as I fear they will just put me back on the sick which I cannot afford to happen because then I will lose my house and get into a lot of debt as they will only be paying me SSP. Any advice and guidance you can give me would be greatly appreciated as I am so scared as to what this diagnosis means for my future

[RubyShoes]

Hi there

Okayyy... there are no two ways about it, this is going to have a huge effect on your life from now one. Please don't be completely negative about it though. Many people with chronic illnesses can't let go of the life they used to lead and keep trying to go back to it only to have major relapses. This makes them depressed thinking their lives are over etc. I went though the same thing with my diagnosis of ME/Fibro. I still kept trying to do the things I was used to doing although I did have to give up my job as a teacher. I found it very frustrating as I wasn't well enough to do these things and I spend a lot of time just lying around being depressed. I guess you could say we go through a period of mourning for our old lives and we don't know how to deal with or handle or new post diagnosis lives. The point is, this is your life now, there is no use trying to live your old life, it will make you ill. You need to look to the future and come up with things you CAN do that don't make you ill. I had to do the same and now I run my own business making customised crutches and walking sticks www.glamsticks.co.uk/new I am a reiki master when I would never have considered anything like that before and I have done courses in crystal healing, drawing and painting. My life is completely different. Yes I do get frustrated and depressed with the pain and the fact I sleep a lot and can't see friends often or go out often but I make myself stay positive that I will get better sometime in the future. I also have to be realistic that this is long term and so I have to manage my life around that. Being depressed and trying to do things that make me ill is not going to help or make me happy.

My advice is find something you enjoy doing. You may have to give up work and go on disability benefits. Try holistic approaches such as meditation, self healing etc. They won't cure you but they will make you calmer. The biggest thing is though is that you have to accept you are no longer able to live the life you have been living. Accept it and let go. Your new life could intorduce you to things you never imagined you would be doing. Since I started glamsticks I have sold them to celebrities, been invloved in two high profile fashion shows and being interviewed on radio, in magazines and newspapers, all this in a year. If I can do it anyone can do it. This is merely a new chapter in your life, it may be an uncomfortable and at times depressing chapter but nonetheless a new one which could open up new opportunities. What's the phrase? 'If you are given lemons, make lemonade'! Good luck and I wish you all the best xxx

[RubyShoes]

Reading your post again I notice you are worried about work and can't give it up. If you can't perform the duties of your role your employer has a legal obligation to try and find you an alternative role. Check out the DWP site for extra info on this. I also think there is help available with mortages if you have to go on sickness benefits. Again, this should be on the DWP site. Good luck x

[RubyShoes]

sorry me again, if you go to the money saving expert forums and go into disability and dosh, the people there are very clued up on your entitlements. It might be worth asking someone there xx

[desdemona]

You know, I have been getting progressively worse over time. I had to retire early from teaching (3 yrs ago) and last year had to retire from my real estate career as well. My family doesn't understand even after time after time of trying to explain. My daughter literally scolds me for retiring( had already taught 27 yrs and real estate 13 yrs), won't talk to me about it, and simply now ignores me. I have an elderly father...93 yrs. old that I have sole care for.
Right now I simply need someone to talk to. Trying to write this without crying but oops...too late.
I had breast cancer ten years ago and about four years after all the chemo and radiation everything began to fall apart health wise.
Fibromyalgia, osteoarthritis, osteoporosis, degenerative joint disease, degenerative disc disease, fatigue, glaucoma, cataracts...The list goes on. My only family is my 33 yr. old daughter and my 93 yr. old dad. No help.
Along with all this I suffer from severe depression...gee I wonder why?

Before this I was thin, active, athletic. Raced sailboats, snorkeled, rode bikes, very social.
Now, I am at home and rarely venture out except to grocery store. How old am I...you ask? 58
How old do I feel? 78

Meds I take: Celebrex, Cymbalta, Trazadone (for sleep), high blood pressure meds, glaucoma drops.
They change who I am. Complaining? No! Accept it...well I pray not only for a cure but for my daughter to simply love me and understand. I have a new baby grandaughter who I would love to be able to pick up and play with for longer than five minutes.

What will Fibromyalgia mean for you? Well...you will go through all of the same steps as griefing and then you will finally accept the fact that you suffer from a disease that is simply disbelieved and ignored.
About that disability...I was denied...they said my meds were taking care of the problem...but what do I know, right?

Sorry, I didn't mean to sound complaining or whiney...sometimes I just need to know someone will care!

[desdemona]

Oh yes...be ready for your finances to change considerably and also understand that your boss will "understand" for awhile, then begin to question if you are simply faking feeling bad, and then they will look at you as someone not as valuable. This disease has no pink ribbons, walks for fibromyalgia, or big stars helping with it. It just has us.

Thank you for listening.

[RubyShoes]

Hi Desdemona
I'm sorry things have been so difficult for you. I wrote on my FB wall today that the world seems to be divided into two types of people 'those who are ill with a chronic illness and those who think we believe we are ill with a chronic illness'. That is not entirely true to be honest as there are people out there who genuinely care and spend their lives as carers for us.

It is unfortunate that the world seems to disregard our conditions. I too find it frustrating that I am expected to act as 'normal' when I am quite seriously ill. I too have experienced severe depression and still do. You can read my blog at GlamSticks if you want to read about all this and see you are not alone.

I have had to come to the conclusion though that my old life is over and I have to embrace my new life somehow. It is not nice being at the bottom of a pit and barely being able to see the light. I do try to be positive, sometimes I feel like ripping up the word 'positive' and burning it. When my mum died unexpectedly a year ago I felt completely like dying. I went through the worst period of my life trying to handle the grief on top of my illness. I HAD to somehow drag myself out of it somehow though. My focus was GlamSticks. I think everyone needs a focus, a reason for continuing. If you haven't got one then find one. I still fall into the pit but I always drag myself out and somehow carry on. There are groups on FB and elsewhere where people in similar situations can chat. I have many internet friends now with chronic illnesses and sometimes we feel we are the only people who understand each other. It's like an exclusive club that doesn't want to be exlcusive!

To the OP there is the distinct possibiltiy you may have to give up work, prepare for that, but it doesn't have to be the end of all things. My husband got made redundant last week so we are looking at an uncertain future but we are trying to see it as an opportunity rather than a bad thing.

Desdemona, I know the pain and exhaustion can put any positive thoughts out of the window, but what else is there? No cure.... so all we have left is our inner strength and resources. Take care and look me up on GlamSticks and feel free to write to me just to moan if you want, I understand xxx

[desdemona]

Thanks for the reply. I feel that if my daughter would just understand and be supportive instead of scolding me because my life has changed that my depression would go away. Most days I do have a very positive attitude, smile and keep going. I do get a small pension from my teacher retirement but the credit bills piled up during the beginning of my retirement and endless medical appts. so I'm facing that as well. I know my post probably sounded negative and I apologize for that. My dream would be to simply be able to sit down with my daughter and talk about this and then she give me a large hug and say I love you...Pretty much have decided that if I keep thinking about that then all the Cymbalta in the world won't help. Can't let these illnesses or family attitude define who I am.

One thing that does help is swimming and thankfully my neighborhood has a beautiful new swimming pool and clubhouse. I've always been a water baby so knowing that swimming helps me it a great comfort...just doesn't work in the winter as it is an outdoor pool.

I tried filling up the tub and doing some strokes but I kept running into the end of the tub so....lol!

It feels so good to know that someone answered my post. Until doctors and the world begin to understand how many of us have this I fear we will be struggling.

Thanks so much!

[RubyShoes]

Hi Desdemona

The sad fact is our families are often the last people to accept we are ill. I hear this all the time from other people that their mum/spouse/daughter doesn't believe they are ill. I think the child/parent relationship is the worst. Unfortuntately children think their parents are invincible, I mean, when we were kids, if mum had flu she just carried on looking after us, who else was going to do it. I think this carries on into adulthood, we just think our parents are superhuman in a way. I will give an example to show you are not alone. My mother in law is in her 70's and has lupus. She tries hard to be independent but sometimes needs help. She got up the other morning and her whole right side was numb and she couldn't use her arm. She needed some groceries so she called her son (not my husband, we live 150 miles away) who doesn't work and lives around the corner. She didn''t ask him outright to come around and go shopping for her, she is too proud but she told him about her arm and the fact she needed a few things and she was a bit worried, she was hoping he would offer. His response? 'Oh be careful when you go to the shop mum' (!!)
This story is even sadder, my own mother was very ill but the doctor kept saying it was just depression and stress, we believed the doctor and not my mum as my mum had a history of depression. When she was finally diagnosed with the widespread cancer she was really ill from we only had a week left with her before she died... We never seem to believe the people closest to us...

I've written a few pieces on what it is like living with ME/Fibro, if you would like, I can send them to you (or look me up on FaceBook, Debbie Deboo) and maybe you can show them to your daughter? Maybe seeing what it is like from another persons perspective, and you say 'that is me too'? I also have some pieces written by my husband written from the perspective of someone living with someone with a chronic illness.

My husband and carer/friend are brilliantly supportive but I feel lonely too. I have the usual sleep problems so I have had to sleep apart from my husband for the last three/four years. Not how I want things to be. I feel guilty my illness has impacted so much on my husbands life. He hardly has a social life now because I don't. He now has 'responsiblilities'... I heard him say that recently and it really upset me. He didn't mean anything by it but I used to be an independent professional and earn my own salary. GlamSticks doesn't earn any money for me really, I don't charge enough to make any meaningful profit. it's more of a therapeutic thing. But.... we have to try... I don't like being in the pit, I much prefer trying to be positive and trying to make the best of things.

It's good you can go swimming, that's something I want to learn to do when I feel up to it (I can't swim!!). You need a bigger bath tub!! lol
Take care xx

[desdemona]

I would love to have you send me the pieces from both perspectives though I know it probably won't be of much help for my daughter's understanding. Please send them to chilicat@hotmail.com and I will print them.
I do agree with you about how they think we are invincible. One day I got very upset with the total disregard and listed all my illnesses with the ending saying:" Get a grip on this. I love you but this is now". It helped for awhile...some empathy. I enjoyed it while it lasted!

You know your posts help alot. I do remember my mom beginning to decline and because I had always seen her rise above everything and get better I simply didn't want to believe that she couldn't anymore. I lost her six years ago after two years in a nursing home. Said I would never have her in a nursing home but dad made the decision and refused to listen to anything else. (Yes, we had insurance that would have paid for home care). I love him and he sat with her everyday but I didn't live close by. Anyway, one side of me understands the inability to believe that things can go wrong with a parent and the other understands what my mother was feeling as everyone around her simply ignored the illness.

One thing I have come to grips with since I have all this "time on my hands" is that our world is so different and self centered, yet there are people out there who try to care. I will never give up the inner feelings that I have always had of caring and forgiving. I want to try to be normal in front of others and thus is probably my downfall. Only until recently did my doctor simply think I had depression problems leading to the other Illnesses until I decided that rather than staying seated upon the royal throne of the exam table I would stand up in front of her and let her see my bent over crooked body. She jumped up and gasped then quickly began to examine places she had never touched...my back, my legs, my pain. Funny, all along I thought she had understood but now I realize she is no different than the rest and I will now, again, try to seek a doctor who perhaps simply "gets it".

I saw on television a doctor who is an expert in Fibromyalgia and the accompanying illnesses that go along with it but, of course, he is far away and probably expensive. I have moved to a smaller one story home which has helped my mobility. I WILL piddle in my garden in the spring but no heavy digging or transplanting. I WILL plant a few tomatoes and peppers but in pots on stands not in the ground which is too hard to bend over and pick. I WILL smile every single day simply because it could be worse and there are others who suffer much worse circumstances whom I pray for.

I have begun to write several of the books I had wanted to begin but never had time for. As a published author from years ago, I am picking up the pen (though now it is the keyboard) and have been in touch with my manuscripts again.

For your inability to sleep I would suggest you talk to your doctor about what my doctor gave me. It works and is not habit forming, though I must use it every night or I would just lie there. It is called Trazadone. Inexpensive and it works.
Cymbalta has a duel ability, that of helping the depression but it is also now being prescribed for fibromyalgia. I began it a few years ago and I must say it has helped me get around better. I tried to get off of it thinking that I didn't need it anymore...of course you feel that way when you are on it because you are ON IT!!! lol
Anyway, without it the pain is unbearable so I guess I will remain on it forever.

Always, of course, consult your doctor before you do anything as I am not a physician.
Ah, the sun is out and the sky is blue! Think I will hobble outside and breathe in the crisp, clean air of Winter! We all need more vitamin D now, don't we?

[desdemona]

Rubyshoes, I just read that you were a teacher too! What a world, what a world...Rubyshoes.

[RubyShoes]

hI
Sorry about not replying, just had a glut of orders and with my health not being too good at the moment....
talk soon xx
will send you articles