Is this normal??

topcatt

Sorry to have another whinge but I am so new to all of this and don't have an appt with rheumy until he 19th so just trying to find out as much as poss to try and help me come to terms with it all. I am so tired all the time - my life seems to revolve around 2 hour shifts ie sleep/rest for two hours, up for two hours hopefully trying to catch oup on normal life which then completely tires me out again!!!! I suffer from depression already, mainly because of the diabetes and the restraints that has put on my life and now arthur seems to be placing even more on it - I don't seem to be able to do anything anymore without it absolutely wearing me out, evrything takes so much effort it really seems that life is hardly worth living - will I ever get used to it, I feel that I can longer do anything that I used to enjoy, I just seemed to be constantly wired up to my TENS machine. Is there any hope, is it normal to feel this tired - I can't wait to get to rheumy and hopefully get some answers. Sorry to go on but I just need to offload and family tend to bury their heads in the sand and pretend nothing is wrong - not very helpful emotionally to me.

skezier

Hi Topcat,

I am sorry you are going through it at the moment. I think once you are seen and diagnosed and have some decent tablets you will find that the flares are less often and not as bad as they are at the moment.

I often think we should not have multiple illnesses, it just doesn't seem fair. I was told that when mine was all over the place the more you listen to your body the quicker it stopped flaring. Trouble is it isn't possible to listen all the time and I think your 2 hourly shifts are probably a good idea. I get told listen to your body a lot as well.

Its not long to the 19th and I hope you will then get help and start to feel less wished. I really hope hey can get this sorted for you and that then the flares will be less often. Take care, Cris

juejue

Hi Topcat

i have that same feeling i never get out of bed now because i am so fedup with it

my family just think i am lazy

most days i want to end it i really don,t know what is stopping me but something is

when i first went to the pain clinic 3 weeks ago thats when i started to feel better because somebody listen to me and are trying to help me i think thats whats keeping me going

going to see the rhumy on friday which is my birthday and wedding anviy

i am sorry i am not much help but i do understand what you are saying


julie x

elnafinn

topcatt wrote:

Sorry to have another whinge but I am so new to all of this and don't have an appt with rheumy until he 19th so just trying to find out as much as poss to try and help me come to terms with it all. I am so tired all the time - my life seems to revolve around 2 hour shifts ie sleep/rest for two hours, up for two hours hopefully trying to catch oup on normal life which then completely tires me out again!!!! I suffer from depression already, mainly because of the diabetes and the restraints that has put on my life and now arthur seems to be placing even more on it - I don't seem to be able to do anything anymore without it absolutely wearing me out, evrything takes so much effort it really seems that life is hardly worth living - will I ever get used to it, I feel that I can longer do anything that I used to enjoy, I just seemed to be constantly wired up to my TENS machine. Is there any hope, is it normal to feel this tired - I can't wait to get to rheumy and hopefully get some answers. Sorry to go on but I just need to offload and family tend to bury their heads in the sand and pretend nothing is wrong - not very helpful emotionally to me.

Hi Topcatt

Try to keep positive, difficult and sometimes impossible though it is at times. Stress only aggravates it all. As Cris says, it is not too long until your appointment. If you can, write a few questions down and if you have photos of your joints when they are swollen, if this happens, that is good idea too, as typically the day of your appointment, swelling seems to magically disappear. I hope you see a sympathetic rheumy. Tell him about your worst days and how this is affecting you mentally too. Things will improve. I hope you feel a little more reassured after this appointment. In the meantime you call in as often as you feel like it, we are here for you.

Luv
Elna x

topcatt

so sorry you are feeling that way Julie but totally understand - life really doesn't seem worth living at the mo - constant pain and tiredness and you are so right - people don't understand how you are feeling and how it can make you so low and tired. try to enjoy your birthday and anniversary tho

elnafinn

juejue wrote:

Hi Topcat

i have that same feeling i never get out of bed now because i am so fedup with it

my family just think i am lazy

most days i want to end it i really don,t know what is stopping me but something is

when i first went to the pain clinic 3 weeks ago thats when i started to feel better because somebody listen to me and are trying to help me i think thats whats keeping me going

going to see the rhumy on friday which is my birthday and wedding anviy

i am sorry i am not much help but i do understand what you are saying


julie x

Hi Julie

Do try to be a little positive if you can, however difficult this is. It would be a good idea if you did not stay in bed all day. Why not think of at least one thing you will do in the day and if you achieve it, that is a bonus. We do sometimes have to really push ourselves, but then feel better for having done something. It is good to hear that things are looking up for you since attending the pain clinic as you feel they are really trying to help you. Now you must try to help yourself too, by starting in little ways. I hope you will write down questions to ask at your appointment on Friday and that you feel you are able to talk about how you really feel and how it is affecting your life.

A birthday and anniversary on the same day. That is a double celebration. I hope the occasions are marked in some way. Isn't that something to be looking forward to?

Chin up, it is not that long until Friday. In the meantime, do keep calling in, we are here for you.

Luv
Elna x ()

carol71

I'm also new to all this and it's only from reading on here that I now know the tiredness I've been feeling the last few months or so (have had to have a regular afternoon nap while the kids are in school) could well be tied in with the Arthur. I'm also wondering if my depression is too.

Tiny fairy steps is the way to go. Split your day into segments and work though getting through each segment before you start to think of the next.

Hope your appointment goes well.

I have no idea what appointments or who I will have to see. I only found out Thursday what my problem was and the doc told me over the phone. All I know is i'm being refered for physio so far.

Good luck
Carol xxx

topcatt

Hi Elna - what a wise person you are I do try to keep positive and try to do little things each day no matter how difficult (and who would ever imagine how difficult getting dressed each day would be - seems like no sooner have you got there that you have tired yourself out and need to go back to bed!) I think that is the frustrating thing about it all everything is such hard work. I have already had to give up work because of other health problems and now I find that I am having to curtail most of my hobbies because of arthur hence the frustration and added depression - even reading is a problem cos it hurts to turn the pages!! So tiredness, frustration, itching and feeling hot and achy all of the time surely there has to be a light at the end of the tunnel somewhere - but thank you for all your kind words all of you on here becuase it does help to know that someone somewhere does understand what you are going thru and your feelings and that you are not alone in this.
Hugs to all fellow sufferers - Denise

debatat

Hi, there is a light at the end of the tunnel, once you are on treatment life will be easier. Also we learn to adapt and find new ways of doing things that are important to us. It is hard to stay positive when you are in so much pain, but try to achieve something everyday so you can say you have done something. It does help, even if it is only a small thing. I hope the time passes quickly till your appt.

Deb

elnafinn

topcatt wrote:

Hi Elna - what a wise person you are I do try to keep positive and try to do little things each day no matter how difficult (and who would ever imagine how difficult getting dressed each day would be - seems like no sooner have you got there that you have tired yourself out and need to go back to bed!) I think that is the frustrating thing about it all everything is such hard work. I have already had to give up work because of other health problems and now I find that I am having to curtail most of my hobbies because of arthur hence the frustration and added depression - even reading is a problem cos it hurts to turn the pages!! So tiredness, frustration, itching and feeling hot and achy all of the time surely there has to be a light at the end of the tunnel somewhere - but thank you for all your kind words all of you on here becuase it does help to know that someone somewhere does understand what you are going thru and your feelings and that you are not alone in this.
Hugs to all fellow sufferers - Denise

Dear Denise,

I am sending you a gentle, very heartfelt hug. You are not alone in all this and life will improve, I promise.

Regarding reading, I am sure there is some aid, others use to make reading easier. Not sure what it is exactly though. You could always post asking. I know it has been a thread on here before.

Keep smiling,

Luv
Elna x(())

valval

hi feel for u when u r bad every little thing is so hard even getting showered :oops: :oops: .i hope u get meds that work for u and u feel much better good luck