New to the Fibro world

[BooBug9422]

Hi everyone,

I am relatively new to the fibro world, although I have had chronic pain for a few years, it has only been recently that my doctors have started thinking they better do something about it and get some diagnosis sorted! I am only 22 so they are being very reluctant to actually label anything, although the doctor and my physio have pretty much said they are very certain that it is fibro, we are just discounting everything else first for the paperwork.

Although I have known for a while that there is something not quite right, I always tried to just brush it off that it was nothing, but it has accelerated to the point that I cannot ignore it now. It is now quite a scary concept that this is my life, and this is a life long, degenerative condition. I am currently in 'flare up' so am in a lot of pain and currently not able to go into work. I work with special needs children in a school, but there is so much other stress at the moment that I have found makes the pain worse? I think it is looking likely that the doctor will sign me off for a few weeks, he has already said how he is concerned at my pain levels and how quickly I have gone downhill.

Did anyone else find that they were OK and then all of a sudden fibro just hit them and changed everything? It has seemed to seep its way into every aspect of my life. It is now making me question everything, whether I can continue working, what will it be like in 10 years time if this is what I am like now?
Does anyone else feel quite low and confused? Particularly right at the beginning or during a flare up? I am struggling with feeling very alone and isolated at the moment, and am in desperate need of friends who understand and who can help me through this process without judgement. I am always concerned when I talk to my friends and family, although they try their best, they don't really understand what I say when I'm talking about the pain I am in, do they just think I am being lazy or making excuses?

I am finding it so hard that all of a sudden I am unable to do the things I could do, or be in an extreme amount of discomfort or pain afterwards - even walking up the stairs, having a shower, driving, texting, undressing and dressing is so hard! I am then in pain, or feel absolutely exhausted and need to lie down, just after a simple task!

Sorry for all this rambling- there is just so much in my head that I need to rant or get off my chest!

Love and gentle hugs xoxo

 

[moe1959]

Dont be sorry, weve all been there. You have found a great forum. God bless you!

 

[BooBug9422]

Dont be sorry, weve all been there. You have found a great forum. God bless you!

Thankyou moe1959,
Just looking through the other threads I can see how supportive everyone is here. It will be so nice to be able to talk to others who know how I am feeling! As I said, I am in flare up at the moment, so feeling very pathetic and sorry for myself! seeing my doctor tonight to hopefully get some more answers!

 

[diamond]

Hi BooBug..I am in the UK and much older than you but everything you are experiencing emotionally is normal at the shock and fears for the future of having this illness.

It doent neccesarily get worse..some people find good life style changes and some take meds that help control pain and other symptoms.

One thing for sure is it is time to listen to your body...everything you mention...from texting walking taking a shower all hurting i can totally indentify with..i remeber the shock isolation and fear i felt as this illness spread throughout my body much as you describe.

Im so sorry i wouldnt wish this on anyone..but dont give up...find a good rheumy and pain clinic and as much emotional support as you can find..family or a local group...this forum is a good place to start...we all understand and will help in any way we can.

I live in the South of England..wish i was nearer and send you a virtual hug and big hopes you find help to manage this condition.

Do things slowly and take breaks...get a little exercise when and if you can...a gentle walk will help if manageable...the key is to stay as fit as possible while not overdoing it with too much exercise..its not easy but if you take care now it will pay dividends long term.

Stress is fibros mortal enemy...i cant really advise as we are not medical professionals but if your job is increasing pain to unbearable levels maybe time to rethink or cut down your hours.

If i can help please feel free to PM me. Take Care

 

[Lou38]

Hiya. Welcome to the forum. Don't beat yourself up about how you're feeling, it's completely normal. I know exactly how you're feeling, I've been up & down so much over the last year or so. From what I've learned so far, it's all about finding the right mix of medications and about finding the balance with exercise, too much causes pain but so does too little. You're very young to have to go through this, I'm not surprised you're struggling to come to terms with it, I hate feeling so useless at only 38 and feel like I'm far too young for this but unfortunately it can strike at any age. You're definitely not alone in here, we all can relate and understand what you're going through and there's always someone keen to offer great advice or understanding.

 

[BooBug9422]

Thank you everyone for being so supportive. It's hard because it is early days and I am having to learn all this and this is the first time, although I have had chronic pain, that I have had a flare up like this. Today has been an especially bad day, I needed my brother to help me get out of bed a get me dressed because I just physically couldn't move. The whole time I just cried, through pain, embarrassment and hopelessness. It eased up a bit this afternoon and I managed to get some sleep, however have just had an argument with my brother in the car and feeling completely useless and stupid now- as well as hurting everywhere. He is only 18 so doesn't fully understand any of this- and I would not expect him to. However, because I am feeling so low, useless, in pain bla bla bla, I know I am being incredibly over sensitive- but at the moment, it feels like everything I say, about anything, he has a quip or snipey comment back to it. It just feels like everything at the moment. We have had disagreements about this several times recently, and I have explained that I feel like everything I say he says something back that makes me feel stupid. Today was just breaking point, I think particularly after the night and morning I had... I am already diagnosed with PTSD and depression so do struggle anyway, but does anyone else feel like this? I don't know how to make him see that at the moment, I am very low and constantly in pain and having to process an awful lot of what ifs? so his constant comment making regardless of whether he thinks is nothing or is just 'banter' is getting to me because I am already dealing with too much?
We have a very difficult relationship anyway, he lives with me and has done for a few years after we left our family home with our abusive father and then relationships broke down with my mother (which are now sorted-kind of) because of an abusive and manipulative (ex) boyfriend of hers...so we are in that awkward - I'm his sister, but I do everything for him, and act like his mother unitentionally and he looks to me as a mother and expects things from me as he would a mother... just feeling utterly overwhelmed at the moment and feeling that no one is really getting it.
My mum is trying to be supportive, but I dont see her often and she has a habit of making an conversation about her.. even the fibro ones, when I am trying to talk to her about what is going on in my body and head now- or articles about symptoms etc of fibro, gets turned into 'oh I have some of that...' but when I am trying to talk to her about what is to me, very important and serious right now, its hard that that is her answer to everything. Again, completely over reacting, over sensitive rubbish... I just cannot wait for today to be over with... and to top it all off my brother has just thrown in my face about buying me a £4 dinner from KFC, after everything I do for him and when I pay for everything...its just the last thing I need at the moment and a total 'kick me while im down' moment...
arhhhhh!!

 

[BooBug9422]

Hiya. Welcome to the forum. Don't beat yourself up about how you're feeling, it's completely normal. I know exactly how you're feeling, I've been up & down so much over the last year or so. From what I've learned so far, it's all about finding the right mix of medications and about finding the balance with exercise, too much causes pain but so does too little. You're very young to have to go through this, I'm not surprised you're struggling to come to terms with it, I hate feeling so useless at only 38 and feel like I'm far too young for this but unfortunately it can strike at any age. You're definitely not alone in here, we all can relate and understand what you're going through and there's always someone keen to offer great advice or understanding.

Thank you so much. I am already finding it helpful just talking to others who genuinely understand and will support me through my crazy emotional rubbish painful moments...without judgement and who get it because they are there/have been there too. Thank you for your advice and support- it means so much x

 

[BooBug9422]

Hi BooBug..I am in the UK and much older than you but everything you are experiencing emotionally is normal at the shock and fears for the future of having this illness.

It doent neccesarily get worse..some people find good life style changes and some take meds that help control pain and other symptoms.

One thing for sure is it is time to listen to your body...everything you mention...from texting walking taking a shower all hurting i can totally indentify with..i remeber the shock isolation and fear i felt as this illness spread throughout my body much as you describe.

Im so sorry i wouldnt wish this on anyone..but dont give up...find a good rheumy and pain clinic and as much emotional support as you can find..family or a local group...this forum is a good place to start...we all understand and will help in any way we can.

I live in the South of England..wish i was nearer and send you a virtual hug and big hopes you find help to manage this condition.

Do things slowly and take breaks...get a little exercise when and if you can...a gentle walk will help if manageable...the key is to stay as fit as possible while not overdoing it with too much exercise..its not easy but if you take care now it will pay dividends long term.

Stress is fibros mortal enemy...i cant really advise as we are not medical professionals but if your job is increasing pain to unbearable levels maybe time to rethink or cut down your hours.

If i can help please feel free to PM me. Take Care

Thank you so much willow. It so helps having people - regardless of whether they are on the other end of the internet who know how I am feeling.
I am definitely struggling with the isolation and fear factor at the moment. There are a lot of unknowns and what ifs going on at the moment, and although I do have a few supportive friends and my brother and mum, sometimes I feel like I have to justify myself a lot for not going in to work, or not being able to cook or do housework... They are trying their best but I've always got that thing in the back of my head that they don't believe me or think I am being lazy or over reacting and being a drama queen.
Thank you so much for your support.
I am definitely thinking about the work aspect of it at the moment.. the only thing that worries me about cutting down hours is the financial side of it. My mum and a few people at my work have said that maybe I do need to completely come away from work altogether, but again, its just so much to process at the moment that I cant even think straight. Was trying to think of jobs I could do from home so I can have breaks as often as needed, be in the comfort of my bed/home etc but I'm not good at anything so I don't even know where to start! was thinking of uni - although it would be stressful, the physical strain of my job would not be there... or do an OU course and do it from home, but again, I dont know what would happen with the financial aspect of it - so anyone that has any info or experience with this, any help would be lovely.
Thank you so much for the virtual hug, when I work out this website I will be sure to PM you! xx

 

[medicmurphy]

What you are feeling is common. You are very insightful in recognizing your sensitivity and how it plays a part with your interpersonal relationships. It is hard for us to wrap our minds around the FMS diagnosis. It is just as hard for our family and friends as well, perhaps even more so as they do not see any physical signs of illness in us. Sadly, we can not enforce the full understanding of this condition in a 'conflict zone'. Perhaps concentrate on YOU. Find your 'new normal', work out a treatment plan, take care of your mental health. I have a philosophy, "choose your battles wisely". This means that there are times that it is best to just let some things go. Don't expend much needed energy on battles you can do nothing about such as constantly justifying your new diagnosis to ones who may not understand. Give them time. Meanwhile work at getting your life in order. We can't change how others feel or perseve things but we can change ourselves. Naturally we want to 'FEEL' that others understand our illness. When we experience depression this need to FEEL understood is more intense. Because of these intense feelings we can risk coming across as force feeding people our reasonings.

There is little doubt you have a lot on your plate and much to sort out. Try and leave others to process your diagnosis and how it impacts you and them. Certainly chat about it when the atmosphere is calm and conducive to actual exchanged communication. In the meantime use your energy to look after your needs.

All the best,
MM

 

[diamond]

MM is spot on in her advice... i too totally understand your sensitivity...because i am the same!

You have sooo much going on ....so many responsibilities..your brother sees you as a mum and i do totally understand how these comments hurt. Dealing with so much and being in chronic pain to such a degree strips us of normal resillience.

No one else can feel the impact of how we are treated or spoken to..and because they only judge from how they see and feel things themselves we can seem over sensitive as they have their health and normal life as huge tools to cope with things life throw at them.

We feel vulnerable, scared and at times humiliated by our limitations and the help we need....while desperately wanting to feel strong and in control....of something we cant control.

And thats without PTSD and depression on top!

MM is right if at all possible dont sweat the small stuff..let things go over your head and focus on yourself..you deserve to care for yourself the most.

LOL good advice but not so easy to do..as i bet you are like me and take your responsibilities and caring for others and wanting to be a success very seriously.

It's true we want validation and understanding..it feels very unjust sometimes when people are forming opinions and have no idea how much strength to just through each day with this illness.

Sadly sometimes even the people who love us are still more concerned with how their own life is and can somehow switch off from our situation.

I've never quite understood how they do this..and personally i think it is often those of us that don't switch off and are natural carers that get this disease..how ironic the most caring people get fibro and then there is not necessarily anyone to care for us in the same way!

MM explains it maybe better than me....but for sure many of us here totally get how you feel.

Take your time with your decisions..if possible let your doctor sign you off work for as long as you need to reassess and rest.

I wish i could help more,

Take Care..sending a second virtual hug way up North on this Friday morning!

 

[BooBug9422]

Thank you very much MM and willow,

Today has been a quieter day. I managed to go and get some food shopping- I lasted most of the time and it was only really until the end that it got to the 'I can't do this'. My brother was very understanding - I think some of what happened yesterday had sunk in a little bit. He came this morning with a fish finger sandwich, only without the bread because it had gone funny before he had noticed (hence the food shop lol) and put the fish fingers in - so in essence I had 2 fish fingers for my breakfast! LOL but it was very nice of him to think of me this morning...he has been very supportive today and much more thoughtful in what he is saying and how he is saying it - which has helped massively.

I have always been useless at picking battles - I am over sensitive but cover it with a quick temper and tough front, but I have downloaded alot of meditation and relaxation apps today so I can start that so hopefully I wont forever feel at breaking point and snap at the smallest things. It so helps having you guys here, that are so understanding and supportive so that when I rant and rave- there is someone there going 'this is OK' and helping me through it without judgement so THANK YOU.

willow, I have a lovely doctor, however, I am worried that after these few weeks he wont sign me off again if I need it, he was semi reluctant to do it this time but I think he could see how much pain I am in and is hoping that the vit D boosters he has given me will 'cure' this. I am hoping he will see that this has been going on for years, and I think the vit D will help, but it wont solve my issues. These weeks will help though, like you said, it gives me time to think a bit more clearly about all this and hopefully in a few weeks, with rest and reduced stress, I will have a clearer head to be able to make some choices about what next...
I am seeing my mum tomorrow too for the first time in a while, it will be just me and her tomorrow so I am hoping that I will be able to get some mothers advice while I am there...

 

[Janette Holzer]

Hi Boobug ,
I was diagnosed coming up for a year now. I worked with early childhood children and went down quite quickly like you. I have had to take 2 years off work and have had several flare ups over the year. I want to keep this positive but it's hard and I know that I wanted the truth no maybe's or probably. So here's the truth because you are young there may be a chance of you returning to working with special needs children. In my case I can never return as I am older nearly 50 and the physical, emotion output the job requires will be my undoing everytime. While I have and had a great passion for this kind of work the stress that is involved now that I look at others' around me who still work in the industry is phenominal.They are not upset but they live their lives at a certain pace which I once did and I can see their stress levels when I'm around them. By this I mean they find it difficult to sit still, they eat their food quickly, they race from one thought to another while having a conversation. I really hope you remain in your job . But if your rheumatologist sees it differently don't be alarmed. I was caught unaware and it took a longtime to accept. Welcome to the forum. Big hug.

 

[Janette Holzer]

Hi Boobug ,
I was diagnosed coming up for a year now. I worked with early childhood children and went down quite quickly like you. I have had to take 2 years off work and have had several flare ups over the year. I want to keep this positive but it's hard and I know that I wanted the truth no maybe's or probably. So here's the truth because you are young there may be a chance of you returning to working with special needs children. In my case I can never return as I am older nearly 50 and the physical, emotion output the job requires will be my undoing everytime. While I have and had a great passion for this kind of work the stress that is involved now that I look at others' around me who still work in the industry is phenominal.They are not upset but they live their lives at a certain pace which I once did and I can see their stress levels when I'm around them. By this I mean they find it difficult to sit still, they eat their food quickly, they race from one thought to another while having a conversation. I really hope you remain in your job . But if your rheumatologist sees it differently don't be alarmed. I was caught unaware and it took a longtime to accept. Welcome to the forum. Big hug.

 

[BooBug9422]

Hi Janette,

That's what I'm struggling with now. One minute I was fine (well not fine but you know) the next, I'm in pain all the time, I can't sleep, if I walk or do a food shop or walk my dogs I almost pay for it. And it seemed to have happened so quickly! I had a few days of weird spasms and an achy feeling then -boom! I'm here haha!
I am trying to think of work, and think I know that it is probably the wrong job for me now..but I just can't think what else I could do?
I have thought maybe I do need a break from work altogether, but I just don't know financially what would happen. I don't know if I would get some kind of benefit without claiming for disability? I'm not sure how it works...

I'm off to look at and test new mattresses today. I bought an orthopaedic one a few months back for my back, but it's so uncomfortable now. I thought my pain was coming from sleeping on my side? Slept on my back last night and in the same amount of pain, still woke up continuously. I'm hoping a super duper soft memory foam one will help, maybe like sleeping on a cloud?

 

[diamond]

Hi BooBug ... i am not an expert but the out of works sickness benefit in the UK is ESA...but to get this you would need a formal diagnosis and supporting evidence from your GP and also from a rheumatologist or consultant would help massively. Incase you need to go down the route even later..its best from now on to keep your doctor frequently updated about ALL your symptoms and the severity and how they impact your life..as in the things you cant do or have difficulty doing.

The other disability benefit is the new one that has been in the media lately called personal independance payment....the same applies to this..its not that easy to get and needs as much medical evidence to support your application...also if you have never done any of these forms before there is a brilliant website called WORK and BENEFITS which you pay a membership fee but takes you step by step through all the questions with helpful advice and pitfalls to avoid.They have helped 100s of people who may well not have been successful without the guidance notes they give.

I had to help a family member do these forms years ago and its quite challenging but not impossible.
The other way to get help is the Citizens Advice bureau have benefits advisers who are trained and will do the forms for you.

Anyway I'm not suggesting this is what you should do....im sure working gives you great satisfaction and maybe there are other options first like reducing hours or switching careers its just you understandably are concerned about finances and thought i would outline the basics..sorry to butt in..lol you may already know all of this!

I hope any new mattress is like a cotton wool cloud ..funny how our once comfy beds hurt our fibro bodies as if we are sleeping on the pavement!!