Thank you for that. I'm sorry your having a ruff time. I don't know if you go to the bookstore but in the recovery section they have really good daily affirmation books. I really think they help. Sending hugs

Reading the poem really makes me understand the suffering you have endured. You are such a kind person who shares so much with everyone,and it's not right that you have gone through so much rubbish.

So many people can relate to this poem. I myself feel like I have been through entirelt too much too. This PN is a form of torture as far as I am concerned.Torture everyday both emotionally and physically. But somehow we soldier on.

I really really hope that you are not feeling so down, and if you are that it is very short lived.

Thank you for sharing the poem.

I've been quite emotional the last few days. I am trapped in the house and suffering quite badly. I don't know if it's another break or if the inflammation is rampant again. I'm due to go in on Tuesday for another monitoring of my Hemoglobin and Hemoticrit. I am also to have blood drawn to monitor sed rate, C-Reactive Protein and another inflammation marker I can't remember right now. So we should have some answers soon. But I'm finding I have no relief from the pain except for sleep (sleep meds are taken). I've been on crutches the last few days because I can't put my weight on my legs. It's not the neuropathy, it's more in the joints. So I was feeling really sorry for myself when this little poem was posted on the Sjogren's forum. It provided me with the hysterical crying jag I needed. I just needed some release. I don't usually let myself release with tears because I spend days eyewise recovering. So everything was all pent up inside.

I thank you all for replying and I hope the little verse helped someone. It was from another Sjogren's patient who suffers pretty badly. I'll try not to continue my pity party.

Billye

Having Sj Syndrome myself,it just get's harder,well that look Drs. get when they look in your mouth,like they never seen a DRY mouth like that before.
Are being along when you hurt is so much well it is scarcy,we don't want to go through another another painfull broken bone,our poor dry eyes. Bless
you honey and that poem will be passed on. Sue

I am so sorry to read that you suffering so much Billye, i do hope they can find out why this is happening, is there anyway your GP can adjust your medications to at least give you some relief, until they can sort this out for you ?

Brian

--don't worry about starting a pity party--most of us have from time to time; it's practically an institution at these boards.

If I'm understanding you correctly--and tell me if I'm not--it seems as if your inflammatory processes are more rheumatoid at this point than anything else, whacking your bones and joints; have you been on any of the more recent RA meds, or are they contraindicated with the concurrent Sjogren's? (I keep thinking there must be some combo that hasn't been tried yet that does NOT involve bone-attacking steroids, which would probably only make your bone/joint issues worse . . .though you may have been through a lot of them . . .the problem with so many immune-modulators is that they produce their own problems one then has to take compensatory stuff for, and by the time one is taking mutliple substances one doesn't know where the "original" conditions end and the substance-induced ones begin . . . )

No doubt about THAT.

Finding ways to adapt and cope, I think will vary from person to person.

You want to make sure Billye that you are getting enough folic acid
to compensate for the methotrexate. If you happen to be one of the
part of the population that does not activate/methylate folic acid properly,
you won't see its benefits.

In that case you need folinic acid...available by Source Naturals, or RX version from your doctor..Leucovorin.
Metanx RX is the only version of methylfolate you can get now. Merck stopped selling it OTC. You might ask your doctor for it, if you have insurance.
Metanx has methylB12, methylfolate and P-5-p-- activated pyridoxine.
B6 is essential for making serotonin..the antidepression neurotransmitter.

Sometimes we make assumptions that something is working, when it is not.
There are 25 genetic errors in folate chemistry, and I expect they will find more. So if one folic acid doesn't work, I think you should give another a try.
Low folate causes depression, with that increased pain levels.

I am so sorry you are feeling so down. Down I understand personally, and I have been on my visor now for two weeks as a matter of fact.
I hope your increased pain levels don't last much longer.

Billye, I really appreciate how much pain you have been going through and I think you are a wonderfully brave and courageous person. Here you are, helping people out on this forum so much, even while you are having problems with terrible pain components. You have helped me out so much. We all get down in the pits at times and sometimes we need to rest there for awhile to recharge our emotional batteries. Just cling to the fact that you mean so much to so many. Hope you feel better and stronger soon.

Billye:

Like me, you probably can't get in and out of a tub, right?? Can you get some hot towels soaked in epsom salts and wrap them around your joints.

I'm doing this today because the weather is so bad by us, I'm walking crooked. My body loves it when it's hot outside but is no good to me whatsoever when the humidity goes above 80. Right now, my sciatica is flaring up. You'd think I would go in the whirlpool and I would, but I can't GET to the whirlpool.

Why couldn't it be closer than 20 blocks??

Oh well, at least my landlord, hopefully, will turn on the heat soon. It's October 27, and they haven't turned on the heat yet.

One day a few years ago, it was 37 degrees, and I yelled out of my window. Turn on the heat please", and the landlord looked at me like I was crazy and said "you are cold??" and I said 'it's 37 degrees outside, for god's sake" and he said "you think that's cold"??? I just looked at him. He's 80, smokes like a chimney, has one leg, and is healthy as a horse.

Good Lord!!!!

Melody

Hey Billye

Go ahead and vent...I think every one on here listens.

Anyway, one thing to consider, is that neuropathy does affect joints. Joints are innervated, tendons and ligaments are innervated, as of course are muscles....any one of these things gets off and you have joint dysfunction. You should see my hands....my ankles and feet are going too, and I have no rheumatoid markers. For me, it is something else, and it feels so darn much like bone problems, but a loss of proprioception makes joints unstable and they wear down leaving deformity, swelling and pain.

I gave in and took my free samples of Lyrica, and guess what, insurance won't cover it. It helps a tiny bit. I tried Neurontin, which they do cover and my husband almost left (not really but I do not know how he puts up with me)...I was a witch....I wonder what Lyrica costs????

Anyway, I have additional testing coming up, thanks to doing a huge genealogy that took up 6 pieces of tag board (just my paternal grandmother's side). Yes, they were an obsessive compulsive lot of people to keep those kinds of records, and some of that OCD was passed on to me, for undertaking this kind of genealogy. If it gets me to a diagnosis, great, if not, at least it kept me busy. I will let you guys know what we find, and don't find. But it is important to have someone listen....we hear ya.