Just need to connect with you

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Just need to connect with you

Postby TATT » Fri Jan 11, 2013 11:31 am

Hi Everyone,

I am so isolated with this illness and my symptoms are changing and I am getting brain tired again. My mood is either okay then the slightest thing can make me furious and then the tears come.

My concentration is going and my words are slow again. Not sleeping, can hardly use my hands, battling with the all over ache and shooting pains is a daily thing but now my headaches are back and no one to talk to about it. I know this should go in the let off steam but I wanted to just feel connected with you.

Xmas has taken it out of me I think, I have been out of a flare for about 6 weeks, my flares mean in bed everyday pain level 8-9 so I have been great managing a level between 2-5 but getting up and pottering. I now feel like my life force is being sucked out and I just feel low.

I think for a while I have pretended to myself that I am okay OR this will go away. Then on days like this I am reminded of the reality of living with chronic pain with no energy and a brain that's 20 yrs older than me and I get angry and depressed.

Thanks for listening Tatt x
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Re: Just need to connect with you

Postby zaralala » Fri Jan 11, 2013 12:06 pm

Tatt,
I feel for you.
I am having a really bad time at the mo. My whole body is stiff and hurting.
I still work and never let it stop me from working, but sometimes I just want to hide a way and feel sorry for myself.
Gentle hugs to you, you are really not alone with this.
Sarah. x
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Re: Just need to connect with you

Postby penfriend » Fri Jan 11, 2013 12:23 pm

dear Tatt, yes this illness and associated illnesses are very isolating. have been confined to bed since about beginning of September, with constant severe pain all over and hands which are so stiff and painful, can barely use the mouse and type, buit desperately trying to keep a little going. my daughter lives abroad so emails are essential. I can do nothing, though I am elderly, up to last Sept. did manage to move my hands. I do not want to depress any of you, but have had severe bodily pain most of my life. Still experimenting with drugs, though you will realise, I always try herbal medicines first, as have had some bad times with drugs. Drs. treat you all alike, just not recognising that we are all different and our reaction to medicines also. As I have severe M.E. also its been a lifetime of disability and pain.
I prefer taking Hypericam (St.Johns wort) rather than amitrypline (was bad on that) and also found a nighttime help recently - namely Panadol Night Pain tablets, poaracetemol with diphenhydxamine (anti-histimine) which seems helpful, though I do not take it every night. it is good to read of all our experiences, as we can glean some help from each other.
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Re: Just need to connect with you

Postby Flash » Fri Jan 11, 2013 12:54 pm

Hi TATT, like wise, I do feel for you. The feeling of isolation, I can really connect with. I also like to think I am fine, the last couple of days we have had some sun shine and I forse myself out accross the fields with my dog. then I realise what a twit I have been as I always hurt like hell and the hoovering I had planned dosen't get done.

Every morning I think "What's the point/" but I have to get up and get through the day one way or another until bed time when another uncomfortable night is in store. I keep thinkng this will go soon and I will be okay but realistically it's getting progressively worse. I also have OA and now, RA.

You're not alone when this forum is here. Take care. :hugs:

Penfriend, I also use hypericum at night and also when I have bad nerve pain in the neck. I had to stop the pain relief I was given due to side effects which were worse than the initial pain. I also have chamomile to help with settling me down emotionally through out the day. A dab of lavender soothes my head aches enough to make them bearable.
I use paracetomol during flare ups, I used to have co-dydromol but that just made things worse.
I don't know of any pain relief that dosen't have side effects but long term all over care helps a bit. It's hard trying to stay possitive though...

I hope you are able to find some kind of relief though, I am 40+ and have had pain through out my life for one reason or another but managed to stay active with different jobs and hobbies, now though, all that has stopped and I think that's what makes me feel worse emotionally, giving it all up and having nothing! I'm dlad I found this forum though, it makes you realise you're not alone and can be quite humbling when you hear stories from those worse off than yourself. Take care and stay warm. Thanks for your friendship. :hugs:
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Re: Just need to connect with you

Postby shazq » Sat Jan 12, 2013 8:00 pm

Hi TATT

Sorry to hear your pain is bad. :hugs:
You might need a change of meds to get your pain under control, sometimes it can do you good as your body becomes used to the meds.

Have you spoke to your gp about your depression & pain? if you go have a chat with them and let them know how you are feeling they will be able to help you and get you on some stronger meds.
Once you have the pain under control then you will be able to rebuild your energy levels back up and start to feel better again.

This cold damp weather does not help our bodies it makes us extra achy.

Hope you feel better soon. :hugs: :hugs: :flowers:
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Re: Just need to connect with you

Postby TATT » Thu Jan 17, 2013 5:51 pm

Thanks everyone,

I am hoping to start a new drug next week will keep you posted

Tatt x
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Re: Just need to connect with you

Postby penfriend » Wed Jan 23, 2013 10:36 pm

hellol Flash, thank you for responding about Hypericam. It is certainly helping me, when I could not take the usual drs. prescription.
I also take chamomile as a tea during the day and also peppermint tea in the evening, followed just before bed by a cup of milky (lactose free) ovaltine. I also take occasionally a sleeping tablet, but that does not seem to be working anymore, so have a Panadol nightpain tablet (crushed) as an alternative.

It is so good on this site of being able to share with one another. Though we are all so different in what we can tolerate, I have found it so helpful in reading how others manage with such intense pain and difficulties.

kind regards, penfriend
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