tired and hurting..... | Arthritis Information

 

i am tired and hurting.....   it is so very hard on these days which turn into weeks then months.    just wanting a little co-operation with your body.    it is like being a prisoner in your body.   when i hurt so bad not even my mind works.........   sorry i just wondered if anyone else felt like me.     wonderwoman

How are you being treated?  What meds?

I'm sorry you are hurting wonderwoman.  I think I read that WanttobeRAFree is feeling pretty bad after her Thanksgiving get together.  She worked too hard.  Sometimes it makes it a little easier to cope when you know you aren't along.  there is a pressure outside right now which is causing me not to function.  i think it is going to rain sometime and my body is waiting.   i have had RA 22 years.  i take remicade plus a bunch of other meds.   remicade for 5 years now.  i believe it has quit working.   all of my drugs eventually do.    the doctors took me off plaquenil about a year ago and ever since then it has been all over the place.    i use to list my drugs but one time i was accused of being an addict by jonathon who was selling monavie so i no longer list anything.    just a tough time... i can feel the heat coming off my knees and hips and feet.   i appreciate all here who understand.    no one in my family experiences these pains so it is hard to share with family and friends.Just as soon as I read, "the doctors took me off plaquenil," I cringed.  My RD said that Plaquenil is a good drug to help keep things under control.  I tried to cut back to one pill a day and found myself in a terrible spot.  You should tell your RD that you want to go back on Plaquenil.  It might help you again. i cannot go back on plaquenil.  i was on it at least 18 years.   i had no idea how much it was helping my RA.  i was going blind from the plaquenil.   i really want to see.    i have been on prednisone for at least 18 years too it has eaten most of my bone mass.   i do not want to go on it again if i can help it.   but i have it and can start it whenever i want........    thanks for trying to help.Sorry you're feeling so much pain, WW.Sorry that you're pain is ongoing.  I hope you can find something else to add to remicade to get you back under control.   I admire your strength in dealing with RA for 22 years.  I am sorry also thanks for all the encouragement......Oh yes, I feel your pain.  I'm not hurting so much as I'm getting very stiff.  And the fatigue is the worst of all.  For the last week and a half I've felt like something has sucked away my will to live.  I thought it might be my blood pressure med but now I'm thinking, since I'm getting more stiff by the day, that it's my RA creeping back up on me.  A few more days of this and I think I can restart my enbrel and mtx again.  Maybe that will help a bit. Gosh, Wonderwoman, most of us have felt as you do...often.

It is like 'being prisoner in your own body'...perfect description. I have often said that having severe RA won't kill me I just feel like I am going to die whilst still being alive.

It's not fun. On my bad days, like it sounds you are having I find it best to do a couple of basic things:

*Be gentle on yourself. Very gentle.
*Be gentle on everyone else.
*Look at what you have to do and what can wait. Only do the essentials. Example: feeding myself and my child would be an essential whereas completing some other task for someone else is not. So for me essentials would look something like: feed me and child simple food, get us in pajamas, get her to bed, pack her lunch for next day and get other school things organised, put load of washing on, only if needed for next day.

Nothing else. You get me? Nothing. Nada. Not a thing more.

* Rest. If you feel that bad. You body is trying to say it's not coping and 'will you please rest me, thank you very much, you crazy human being who keeps pushing yourself!!!'
*Just keep doing these basics until you start to feel better. You will. Sometimes I need to do this for a day or a couple.
*Accept your RA and what it means. Allow it space in your world. We keep resisting, fighting and struggling which just makes our ability to cope diminish. When we stop spending energy on a war with our illness that we can't win. Then we start to be able to see ways of coping we had not before. So having an attitude of, "hey, I am going to allow this disease, I don't like, just to be part of my world and see what happens?'

It can make an amazing difference in our worlds when we stop fighting it and just let it be.

Hope some of these ideas help. They are sort of my basic toolbox when I feel like I am dying or a prisoner in my own body.

Cordelia2008-11-30 14:46:12(((Wonderwoman))),

sending gentle hugs. I hope you experience relief from the pain soon.  I think we have all been there at some point or still there. as well as the family situation. it used to bother me about family not understanding, now I am too busy fighting for quality of life to notice them. the online ra groups help with that part of it, even if it is just to let you know you aren't alone in dealing with RA - the torture chamber.  I stopped plaquenil a long time ago in '97 but recently asked if I could go back on it. my eyes are a constant problem with sicca symptoms so the rd has been hesitant to place me back on it. that's the problem, is that it sometimes takes a cocktail of meds to maintain a functional level of pain relief but not always possible for various reasons.

do you use the homemade remedies like icy hot patches or heat/cold pads, sitting in a whirlpool helps me too. staying hydrated helps, and this is hard to do but getting enough rest helps too. I tend to sleep only a few hours at a time sometimes. not good for ra. a healthy diet helps. difficult to maintain around the holidays, however.

hang in there and feel better soon.

Wonderwoman,

I am truly sorry you are in so much pain. It helps to talk about it. It is hard to tell family members all the time, I feel like they will just start rolling eyes. Please feel free to lean on us here. We ALL understand. Please rest, rest, rest. You do have some sort of pain meds?

If not don't suffer, get some. Let us know how you are doing today.

Thinking of you,

Lisa

It does help to take it easy and just give in...rest rest rest..with litte bits of exercise in between...Im also in pain lately, nothing is helping so i know how you feel. Lousy...Hopefully it will pass for both of us.

    wonderwoman     Oh, WW, I do actually take my own advice, I have too because I feel like you describe much of the time. I developed that simple criteria I shared with you before due to experience and trial and error so when the overwhelming waves of RA hit, I have a simple strategy to hang onto. I sincerely hope it may be helpful to others when the whole RA thing gets on top of them.

The constant gnawing of pain gets to you after a while...it will ease and it will pass unfortunately it is usually not instant. In our instant gratification society, the journey with RA either teaches us patience or we go crazy.  [QUOTE=Cordelia] I developed that simple criteria I shared with you before due to experience and trial and error so when the overwhelming waves of RA hit, I have a simple strategy to hang onto. I sincerely hope it may be helpful to others when the whole RA thing gets on top of them.

The constant gnawing of pain gets to you after a while...it will ease and it will pass unfortunately it is usually not instant. In our instant gratification society, the journey with RA either teaches us patience or we go crazy.  [/QUOTE]

 

Cordelia....your words have been copied and I hope like Hell I never have to go there again, but if I do, those words will light my way. One wise lady you are, thank you!

 

Wonderwoman, I hope you get to feel OK at least, very very soon. I send {{{hugs}}} to you with heaps of gentle thoughts.

 

Lisa, ( pincushion) I am sorry to hear you are still not over what whacked into you recently when you were in Blackpool. Huggles to you too and I predict a wonderful Christmas for you and the family....painfree. So there!!

Well, thanks Lyndee. I am glad that you find what I said useful.

I think in the midst of RA chaos we often need simple but effective strategies to hang on to as it can feel so overwhelming. Over the years I have worked out for myself these basics that work every time.

I think one of the easiest traps for us to fall into is thinking we should be 'normal' and cope with life the way someone without RA does. We beat ourselves up a lot for not coping better.

But there is no normal really and the only pace one needs to go at is one's own.


Well, today, dear friends am I definitely having to take my own advice. I am in awful pain and super stiff. Going to be a gentle day for me I think. Im better today, Our weather has turned frosty and cold..this weather for me is like an instant cure...my body hates the damp rainy conditions but i feel wonderful with the icy cold dry weather, oh and i had a cortisone injection...lol so it could be that.. I was so bad yesterday that i begged my doc for another jab, im not due one but its done the trick. Cordy..sorry you now feel so bad..take it easy and rest

Wonderwoman..I hope things are looking up for you too

icy. cold, and dry sun out with no rain in the future.  i too usually feel alot better.  it is when you are waiting for it to rain for days 
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