No pleasure anymore

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No pleasure anymore

Postby geo » Wed Sep 11, 2013 2:59 pm

Sorry for the depressing mood and topic but finding it very hard today and just can't help think about it.

I've only been ill for 6 months and still havent had a diagnosis of anything but a lot of it sounds like fibro.

It seems like I can't do anything without a massive increase in pain/fatigue that makes it impossible to carry on. Even typing this will give me so much more pain in my hands and arms for the next few hours, any physical activity, even walking, is a struggle. Found it hard from one day being an extremely active 19yr old to the next feeling like death, and that feeling just keeps getting worse :(

How do you guys manage it and find time or activities to give you some joy?
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Re: No pleasure anymore

Postby SchroedingersCat » Wed Sep 11, 2013 4:04 pm

Sheer bloodymindedness. This isn't going away any time soon, after over 2 years of it, I just do what I want and try to ignore the pain. I'm too young to stop living already. But then I don;t have any other conditions apart from the FM to deal with, I'm one of the lucky ones with only a mild dose
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Re: No pleasure anymore

Postby denys » Wed Sep 11, 2013 4:14 pm

Have to say I would answer the same as SC mainly because if we didnt push things then we would end up unable to move at all, we have to push to a certain extent even though it hurts but also need to know when we are approaching our limits and stop. Thats the key to this condition, pacing.

We all forget sometimes and push to far, then we pay for it so then hopefully we learn for the next time (we dont cos we forget :lol: :lol: )
hope tomorrow is a better day for you
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Re: No pleasure anymore

Postby Karou » Wed Sep 11, 2013 5:19 pm

Everyone has good and bad days and I always find talking helps. This place is great, always understanding people here who will listen and try to help.

As said above pacing is what helps. Having said that, I've always been known not to listen to my body and now it'll make me pay. Still, I push and do something fun every now and then, even if it's a very slow walk on the beach with lots of sitting in between. Or a trip to the hairdresser, etc. I know it will hurt and I'll say "why did I have to over-do it again" but the pain levels will go back to normal (well,normal for Fibro).

Have you been given anything for pain relief? Maybe a hot bath, heating blanket or wheat bag can help. Or if you prefer ice, you can buy re-usable gel packs to put in the freezer. Some of them even work for hot and cold use. Also, have you looked at TENS machines? There are different ones, maybe you can get some relief that way. Doesn't work for everyone but I bought a small one that runs on batteries and I'm happy with it.

Hope this helps. Sending you gentle :hugs: :hugs: :hugs:
Gentle :hugs: :hugs: , Karou

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Re: No pleasure anymore

Postby whoami » Wed Sep 11, 2013 5:22 pm

Geo...first of all you need to get some sort of diagnosis to see what your symptoms are all about. Your Dr should be helping you with dealing with the pain and depression.

If you have fibro,i am sorry to say you are in for a long hard journey. As one Dr told me, you are going to live a painfully long life. He also has fibro.

Geo, in saying that, it does not mean your life of enjoyment has come to an end. Those of us that have been dealing with this illness a long time (me 24 yrs ) will tell you that we can live very happy, productive lives. The key word to doing so would be "change".

We have to learn to change the way we do things. Maybe we can't physically play a sport but we can, manage, coach, train or just support a team. Maybe we can't run around the park kicking a ball with our kids or climb a tree but we certainly can go to that park and encourage our kids in what they do. Have a picnic with them.

My point is, we can still enjoy life. We have to learn new ways of doing so.

As Denys said, we have to push ourselves, learn to pace. Learn our limits but always challenge them. Like an athelete, push for that goal.

Geo, as with any chronic illness, attitude goes a long way. If we live in a world of I can't then we never will!

Geo, I realize this is all new to you but as you hear from other people how they cope, how they adjust, how they live, you will find that this new life can be a good life. A life full of love, participation, productivity and self worth.

Geo, fibro does not define who you are, it does not hold the map to your journey. You do! Don't let fibro control you.
You control fibro.

Geo, it will get easier. I won't lie and tell you that it isn't a struggle. There are many wonderful, understanding, caring and loving people here that will hold your hand and guide you and pick you up when you fall.

Geo, live and enjoy life!
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Re: No pleasure anymore

Postby ecologisttobe » Wed Sep 11, 2013 6:13 pm

Hello,

As much as you will get sick of hearing it pacing your activities is 100% essential. You have to accept that you can no longer go shopping for 6 hours or go clubbing till the early hours that kind of thing.

I found the first two years of fibro the worst but it has got better for me.

Buy/ask for aids and appliances to do things especially in the kitchen. The more pain you save on necessary tasks the more opportunity you will have to do more fun things. Also don't be too proud to use mobility aids when out and about or asking for help. :-)

I enjoy life a lot...I don't have much money but life isn't about something as common as money. I am study a course I love doing, I am buying a mobility scooter so I can travel again with less pain/fatigue, I have been given the opportunity to do part time/casual work I enjoy doing...

I find it best to avoid thinking of the can'ts as this will just lead to depression. I prefer to think of the "How can I do this differently?" :-)

Another thing many people seem to not know about is when you go for a job Access to Work is as they say "the governments best kept secret". lol

Faith is what gets me through the tough times but I know not everyone has similar beliefs but there is always something to get you through once you find it.
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Re: No pleasure anymore

Postby painprincess1 » Wed Sep 11, 2013 6:55 pm

yep SC is right bloody mindedness is sometime all u can use with pain killers,and as said before good days bad days ,learning when to do things and when not to.i mean dont give up everything if u do have fibro u have to keep that fighting sprite.we all get crappy days weeks months even but dont let what ever u have rule your life its part of u not who u are xxxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: No pleasure anymore

Postby geo » Wed Sep 11, 2013 8:34 pm

Thanks for the replies everyone, all of your comments have really helped. I don't really have anyone to talk to about it who understands apart from my GF.

Not having a diagnosis is very hard, and im waiting on the results of another MRI scan, but I can't see it coming back with anything.

I'm sure tomorrow will be easier :) thanks all :D
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Re: No pleasure anymore

Postby denys » Thu Sep 12, 2013 1:23 am

:fingerscrossed: :fingerscrossed: Geo :hugs: :hugs: :hugs:
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Re: No pleasure anymore

Postby geo » Thu Sep 12, 2013 11:03 am

Full-spine MRI was clear, and so it goes on!
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Re: No pleasure anymore

Postby painprincess1 » Thu Sep 12, 2013 2:01 pm

with out sounding thick have u asked your dr about fibro
smiles and the world smiles with you. cry and you cry alone.
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Re: No pleasure anymore

Postby whoami » Thu Sep 12, 2013 2:07 pm

MRI clear, that is good news!

Doesn't it all sound odd. The Dr's can't diagnose anything through tests ........ although those negative tests could be a diagnosis. :dunno:
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Re: No pleasure anymore

Postby geo » Thu Sep 12, 2013 4:16 pm

painprincess1 wrote:with out sounding thick have u asked your dr about fibro


Yeah I have mentioned it to her, she said other stuff has to be ruled out first, and ive had a lot of tests, not sure what else is on the list xD Seeing a new doctor tomorrow due to mine being on maternity leave, which means I get to explain the whole story again, yay! xD

I think i will ask to be refered to a rheumatologist, do you guys have good experiences with them?
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Re: No pleasure anymore

Postby denys » Thu Sep 12, 2013 5:25 pm

Yep its where I got my confirmed diagnosis from so :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: No pleasure anymore

Postby MichelleJ » Thu Sep 12, 2013 11:04 pm

Hi geo, not gonna repeat what others have said but you mentioned physical activity being difficult. This is something I really struggle with and I have to use a wheelchair which my carer has to push as I can't self propel. But the one things can tolerate is swimming. It took along time to build it up and I had to start with just standing in the water and doing really gentle exercises in the water and built up from there. I can now swim 10 lengths of a 25 metre pool in a session. I was at 16 lengths but relapsed and had to start from the beginning again. An exercise bike is also non impact and again this is something the physio helped me tolerate in small amounts. Maybe these are things you could try but don't push too hard, start with really small amounts and build up and its really important you stop BEFORE you reach your limit. Aim for 70% of your capability as the point at which you stop. This is a basic pacing rule I was taught on a pain management course and you need to apply it to everything you do, not just exercise. Like for me I even have to apply it to my cardmaking hobby as well as the bigger activities in my life.

I am really disabled with my fibro and m.e and have 25 hrs care a week from my carer and my husband has to do loads for me too. But with help from my drs, the pain management team, the physics and my carer I have found things I can do and learnt different ways to do things. It's changed my life beyond recognition since I got bad in 2010 but I have lots of positives too like I've made some fab friends who will be friends for life and who I know are true friends. Good luck
Dx with fibromyalgia m.e/Cfs and asthma
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