[keebler]

Hi Everyone,

I have been in pain for the last few months. I am getting so tired of it all. It seems like the pain has set in permanent. It doesn't seem to be letting up.

The barometer went down today and now it is going back up. I took a 2 hr nap this morning. This evening I took another 2 hr nap.:asleep:

I do take pain medication. I went to my GP about it last week.(he handles pan med) He said he could up it for me. I decided to wait to see if the metho ever kicks in. I am trying to be patient with the metho, but today was pretty rough.

Thank for reading my whine.

Love,
Lyn

 

[macfamily53]

Hi Lyn

I am so sorry that things just dont seem to be letting up any for you(((hugs))).It seems like forever for you with so much pain and then the fatigue also(((hugs)))for you.I am still hoping and praying that things let up for you some time soon.You've been through so much my friend:sad:.Take care of yourself and please let us know how you are doing.(((hugs))).

Tammy
((((lyn))))

 

[peonyprincess]

Lyn,

Sorry to hear that you have been under the weather as well. I hope you get your pain under control soon, I am sure the weather isn't helping matters much. If you have to give in and up the meds, then do so, comfort is very important.

Nancy

 

[chel]

pain and/or naps?

When the pain and fatigue set in like an Alaskan winter, it is amazing that anyone can see through the cold to know that spring will come -- to know that there may be a day of less pain or even a day to smile easily.

At work I feel like a shadow of the person I used to be, faint and barely there walking the halls trying to console and bring hope to youth and peer workers alike. And yet for months now it has been difficult to even exist there. I've had to take more days off than I've ever had. Saturdays I spend entirely in bed, Sundays ... is one big nap day. If I could, every day I'd take a three-four hour nap around one o'clock and still be in bed by 7 or 8 PM. sigh. A co-worker had the ... gall to say, "Why don't you apply for disability?" I tried not to snort in disgust. If she only knew how bad lupus can get and what some of you have to deal with daily, she would know better than to suggest that I try to surrender right now.

Whether the storm Lyn. Look for the green meadows. Find something that doesn't take caravans of energy to be able to enjoy doing. Trust that others have endured before you and that your path lends hope to others as well.

And if none of that works? Just stay connected to us even if it's "whining" in your opinion. Any communication is better than silencing your own voice.

Big hug.
~chel:blush:


Many of us have been, are, or will be there again with you though we may be separated by oceans.

 

[LolaLola]

Hello Lyn,
Sorry the pain is bad right now. Sometimes there is no real pattern to it. I hope it passes,but meanwhile do every little thing you can to ease it. I know there are no big miracles,but often a combination of all the little things that help can make it bearable. I hope you at least get a good nights sleep tonight.
x Lola

 

[LoopyLoo]

(((((Lyn)))))

Oh how I hear you my friend! I've been in constant pain for going on 9 months now. If I get the pain under control then I'm a zombie with no life at all - otherwise I get by with the edge taken off it but I'm a grumpy so and so and still struggle. :grrr::wall::hissy:

It can be so debilitating and it affects every aspect of your life. I really don't mean to sound negative - just here to say that I understand.

Hope you get some respite soon.

Gentle hugz,

Pam xxx

 

[Sage Hen]

Dear Lyn,

I am so sorry to read, that you are still in so much pain. I hope your metho, begins to help you soon.

It sounds like you are in a bad flare, friend. Hopefully, with you getting the rest your body is needing, you will be rebounding soon. I sure hope so..anyway.

Love you,
Sandy
:hug::flowery:

 

[sunflowergirl2]

Lyn, I'm so sorry to hear that you are having so much pain! I can't help but think that all the grief and stress you are going thru is aggravating the situation. Hugs and prayers! Cathy

 

[Lily]

(((((((((((((((((Lyn))))))))))))))))))

I too am sorry to hear things are so rough for you right now. It's been one heck of a rollercoaster ride for you. I do hope the Metho kicks in soon and I also think that increasing the pain meds for a little while until it does sounds like a good idea.

Feel better :hug:

love
Lily

 

[Douglas]

Howdy Lyn,
First, my sympathies. Long term pain is incredibly tiring and wearing.
Second, a word from my expert pain nurse and my former MD: it is easier to keep pain down than to push it down. Therefore avoid pain.
Easier said than done but their position was that I should be in as little pain as possible. Thus when one regimen of pills no longer did the job they would put me on another. For the most part I can say that in my waking hours I am normally pain free as long as I take the pills AND get plenty of rest. Naps and sitting with my legs up much of the time are necessities. I would suggest that you talk with your medical caregivers about all this. Lupus may be a fatal, ugly, nasty, rotten, depressing disease but there is little reason for 24/7 pain.
Discomfort, on the other hand, seems unavoidable.
But with today's medications you should at least be able to cut down on the pain.
When I had my first bad round of this in the 1970s (though back then it was not Dx'd as SLE) I had that constant "ear ache in the knees etc" pain for months on end. Wallowing or doing physio exercises in a pool of hot water in the hospital or at the Banff hotsprings was the only relief.
Now pills and rest seem to be doing the trick.
But now and again I still like to complain on the forum.:lol:
All the best.
Douglas+

 

[onetay]

Lyn,
I am so sorry you are having a ruff time with the pain management. Would the doctor let you adjust it on a daily bases? That way when you need a little extra help it would be there for you and when things are not so bad you can lower the dose. Comfort is an important part of feeling better. Hon, don't worry about the naps as you must need the extra rest at this time. I often find that I need a nap and when things are pretty ruff several naps are very nice. Wish I could help more, wishing you some relief soon.

 

[elle-co]

((((Hi Lyn))))

Sorry to hear your in so much pain right now. sending you lots of gentle hugs and hoping and praying that the meds start working very soon.

hugs
Elle x

 

[Monica3]

Dear Lyn,

So sorry to hear about your suffering. Pain is really a great distractor from life. If you need to rest and nap, then do so. If you can get relief from increasing the pain meds and the doctors help with that, then go for it. You will come through this. Be kind to yourself.

Feel better soon. Wish I could help you more.
Monica

 

[mysharonna]

Hi Lyn,

Pain can take over all your thoughts and actions for the day..I am so sorry to hear you are struggling so with it. I hate taking pain meds, but sometimes they are necessary to feel comfort..to feel like a human being again.

I do hope things start to kick in for you soon and bring you some relief.
Sharon

 

[lazylegs]

Ah Lyn, I hate to hear you are so miserable. I think you might need to increase the pain medication just as a bridge until the metho can take hold.

Nap all you want. Your body is letting you know it needs some R & R. I used to fight it but finally discovered it is just part of the prescription to feeling a little better.

Hugs to you,
Lazylegs

 

[keebler]

Thank you everyone for your support. You all make me feel so much better.

I had rather a tough weekend. We traded off our full size, popped roof van. That van was used mainly for Candii. There was a lot of memories that went with that van. It was like loosing another piece of Candii. :tears: I cried all the way home that day.

You all are right, I need to get better control on my pain. I keep hoping the metho will soon kick in. I have been on it now for 4 weeks. I will give my rhumey a call tomorrow and see what he thinks.

Thank you!
Love,
Lyn

 

[BigSis]

Hi Lyn.
What a time you've had:hug:
I can completley empathise with how you must have felt parting with your darling Candii's van.
Remember though, it was just the van that has gone ....not those precious memories.

Hoping for some relief from the pain soon

 

[cad]

Hi Again Lyn,
I too am sorry you are having a rough time, I 'm there too, as others have said constant pain and trying to figure out strategies to deal with it.

I think you should definately have your pain meds reviewed and not feel like it is negative if they need to increase at the moment. I really hope the metho gives you some benefit too, my rheumy said upto 6 mths for maximum benefit once dose is titrated up, so I will be keeping my fingers crossed for you.

Just try to make life as easy as you can for yourself and not get on your own case, you have had so much going on the past few months that you really deserve to just try to focus on getting yourself feeling more comfortable.

Sorry that you had to deal with the situation with your van as well, it must have been really difficult, but its true that all the memories attached to it are with you always and you can remember them whenever you want to.

Take good care dear Lyn and I really hope things get better soon.

Try to rest when you can.


Cassie

 

[confused1]

((((((((( Lyn))))))))))) I hear you loud and clear. Pain sucks. I also sleep too much to avoid pain. But when it's bad I dream about hurting. That sucks too.

I don't have any advice or much in the way of comfort to offer, but I understand and I wish it was different for you and I am here if you need to vent huge and over the top. I do care so much. If I could, I would make all the pain in the world go away. I've been asking myself, why do Wall Street execs who lost my husband's 401K get a bonus while I get pain? :lol: Of course there is no answer. It's just how life is......wish I could make you better dear Lyn.

Hugs,
Sunny

 

[keebler]

(((Big Sis,Cassie & Sunny)))

Thank you for your posts, hugs and caring. It means so much to me.

To make things worse the pharmacy where I get my meds from, was running low of my oxycontin. She said everyone was needing their scripts refilled at the same time. I found this out when I was in a hurry to get to my sons. My little GD ended up in the hospital. The pharmaciest said she would get them in on Friday. When hubby went to get them, the order did not come in! Apparntley she hadn't filled the order form out right.(she said they usually call her when she has done that, but this time they didn't)

So I have been taking only one a day until I can get ahold of my doctor and tell him what has happened. I now know how much the pain med was helping me.

My GD is out of the hospital and slowly recovering. She had a very nasty virus.

Take care.
Love,
Lyn