Physio & yet another diagnosis

[Lou38]

Omg where does this horrible nightmare end! I'm seeing so many different healthcare professionals and every one of them has diagnosed me with something else. I had a physio appointment on Wednesday after my rheumatologist referred me and was told that I had osteoarthritis in my knees which is why they give me so much trouble, this is the first I heard about it even though I saw my rheumatologist last week. My physiotherapist advised not doing much cycling, the only exercise I actually enjoy. To think last year I was cycling almost 100 miles every week and did a 50 mile charity bike ride to now be told not to cycle much at all. Fibro is slowly robbing me of anything I've ever enjoyed, life sucks sometimes!

 

[vickythecat]

Fibro sadly often comes with loss - so it is important to be aware of this mourning process, however, this does not mean that you can't do anything. If you cycled 1 mile a day, now you walk 100 meters a day (imagining the worst case scenarios). And even on days that you can't handle that, you learn to be thankful for being able to take a shower, cook or even clean one room.

Maybe, through acceptance and the right medication/therapy, you can go back serious cycling, but maybe not every week, but just once a month. Focusing on what we can do, instead of what we no longer cannot is part of life with fibro. It sucks, but we can cry about it or we can make the best of it.

 

[Tipnatee N]

I wish I could say to other FM sufferer that all you need to do is hanging in there and it will end soon. Unfortunately the more of a doer we are the worse it can get for us. It's kinda like our body hate our guts and just want to put a stop to everything that we work so hard for by keeping us in loads of crazy pains so we can't do any of it any longer and cleverly blocking us from fixing it. I hope one day in future there will be help or real way to get rid of it forever or keeping it away. But right now hang in there Lou38!!

 

[Lou38]

Thanks for your reply vickythecat. I'm still struggling to accept fibro I guess and am very much thinking about what I can't do rather than what I can. This last year I have lost so much because of fibro, my job included so I still have a long way to go in terms of acceptance. I know there are other people with much more advanced fibro than myself but I'm only human and mostly only think of how it affects me. Sorry I know this probably sounds selfish, I struggle to explain what I mean and always end up offending someone.

 

[Tipnatee N]

Thanks for your reply vickythecat. I'm still struggling to accept fibro I guess and am very much thinking about what I can't do rather than what I can. This last year I have lost so much because of fibro, my job included so I still have a long way to go in terms of acceptance. I know there are other people with much more advanced fibro than myself but I'm only human and mostly only think of how it affects me. Sorry I know this probably sounds selfish, I struggle to explain what I mean and always end up offending someone.

Even though you were replying to Vicky but I have to say that I've lost everything to fibro also job included. Now I'm practically homeless having to depending on other's for survival at the moment isn't the best of feeling . But I will get my life back somehow. Just think of it this way , you are now on a forced vacation even though it doesn't feel like it but the hell with it. Sure there are things you could have done but as human as you are you've got to live you life first , then along the way you will find the next best thing to live for. But right now it's time to taking the best care of you so you can get your life back .

 

[diamond]

I remember my first couple of years with fibro...the shock..the sudden change..i even joined a support group and could still drive back then.. i remember sitting there as i was pretty severely affected right from the outset..and watching some of the people walking around making tea and snacks with heeled boots and shoes and laughing and upbeat and i was like a rabbit in head lights sat there hurting head to toe...feeling like crying.

I was already having to adjust to complete flat boots for comfort with thick spongey soles to walk outside and then my walking was limited to maybe 40 minutes on a good day. One lady could still play golf! I could believe it as my arms hurt picking things off the supermarket shelf or lifting a saucepan when trying to cook dinner.

I remember thinking Im never going to survive this as i could barely push a trolley around the supermarket and then make it back home and crawl into bed with my hot water bottles to ease my all over aches.. back pain and desperate get off my feet and legs.

I carried on doing everything..my housework ...driving, cooking....and gradually realized i had to adapt and like vicky says i decided i would walk little and often rather than boom and bust...and do the other things in small bite size chunks...then rest in between.

After 2 years i also had to give up driving but instead enjoyed and appreciated even more when my partner could drive us out and i could at least walk for a while..sometimes amazingly for a whole hour.

Now a decade later without going into detail i am much worse and can barely walk around the house.....so i of course would grasp in a moment being able to walk for even 30 minutes and dreams of the days i could drive and do a supermarket shop are a dim and distant memory even with having to manage the pain after .

Fibro sucks that's a fact and adjustment is not fast.....it also normal to think of our selves as much as we do support each other.

Like vicky says aim for what you can do....in time you will reach a level of acceptance and appreciate the small things you achieve more.

You might surprise yourself.....maybe you wont be able to cycle but maybe there will be active things you can do that replace it.

Please don't be sorry Lou this adjustment is making you angry sad and frustrated.....it s all normal.

 

[vickythecat]

Thanks for your reply vickythecat. I'm still struggling to accept fibro I guess and am very much thinking about what I can't do rather than what I can. This last year I have lost so much because of fibro, my job included so I still have a long way to go in terms of acceptance. I know there are other people with much more advanced fibro than myself but I'm only human and mostly only think of how it affects me. Sorry I know this probably sounds selfish, I struggle to explain what I mean and always end up offending someone.

You are not being selfish whatsoever, like you said you are being human and fibro is such .... there are no words for it. I can just describe it as 'ahhhhhhhhh' illness. It takes so much away from you, who you are, who you wanted to be, even your dreams and hopes/wishes for the future.

In fact, if I'd advise everyone diagnosed with fibro to become more selfish. It is very hard for us, because I also think that fibro more often hits people who are the most caring, most giving and the most generous. And for those kinds of people to become selfish = say no, focus on themselves and their well-being is also very difficult.

I also lost my job, my career. It was 3 years ago and it still hurts. Besides financial troubles (in fact, I just burst into tears 5 minutes ago because I spent 30 dollar on stupid supermarket stuff. Life is so freaking expensive, hate it so much), you also lose your 'status', your 'ego', your lifeline, a huge chunk of who you are.

I hate it how in every life situation, one of the first questions a person will ever ask you is 'what do you do?'. My answer is 'I used to work on human rights projects'. Most people, thankfully, do not ask further. But it hurts...so it gives me another reason not to meet new people. What will I tell them? I sit home all day and hope hopelessly that the pain and fatigue will disappear. what a life...

 

[vickythecat]

I remember my first couple of years with fibro...the shock..the sudden change..i even joined a support group and could still drive back then.. i remember sitting there as i was pretty severely affected right from the outset..and watching some of the people walking around making tea and snacks with heeled boots and shoes and laughing and upbeat and i was like a rabbit in head lights sat there hurting head to toe...feeling like crying.

I was already having to adjust to complete flat boots for comfort with thick spongey soles to walk outside and then my walking was limited to maybe 40 minutes on a good day. One lady could still play golf! I could believe it as my arms hurt picking things off the supermarket shelf or lifting a saucepan when trying to cook dinner.

Gosh, I really thought I was the only. This is exactly how the time around my first diagnosis was as well. I didn't have a support group, but I had 2 other colleagues diagnosed with fibro. They'd come into my office, wearing their high heels, make-up on, great clothing, lots of laughs and stories to tell, how their drove their kids around, how their last holiday was etc. and I was just sitting there with my ugly but comfortable sports shoes (thankfully my boss was often away, so I didn't have to switch to my 'office shoes'), I could barely get up to even make a nice cup of tea for myself, or even concentrate on what they were talking about. I was in so much pain, was so exhausted....

I remember trying to smile...and just feeling worse and worse about how difficult it was becoming even to 'fake' it. I've always had to fake in life, due to mental illness, but with fibro, even putting this happy face to the world is impossible.

I am sorry that your fibro has also gotten worse over the years. Mine has to, even though I quite working and thus the stress of it all. I thought that would help, but it did not.

But despite the setbacks, the constant agony, I am really happy that you are trying to stay positive and enjoy the little things in life. The latter is so so sooo important in life.

Warm soft hugs to you all, my fibro friends. You are the greatest people I know!

 

[Tipnatee N]

It's exactly like what diamond said which I couldn't have said any better. For a while I was watching my self deteriorating, (I wish I could also share the experince in words of how it was for me like both Vicky and Diamond, but at this moment I couldn't cause it still hurt me deeply and I must stay away from speaking about it.) However after a while I finally accepted that's how it is. Then I reprogrammed my self set from 0. And like diamond said, I have surprised my self yet time after time what I hardly ever knew that I could do. I even attempted small business online for a while without ever living my house. I studied up lots of new things I've never knew before that I could, and put it to good used in only way that I could. Some did even made profits and some had become very helpful hobbies that almost replace my anti depressant meds and now I able to ween my self off them which made my brain fog more manageable. I'm broke so I went on 30 days elimination diet program, cause it's cheap and very helpful for the long run. But everybody are different you'll never know what you might find beyond what you were capable of before with the limits that you have.