I was diagnosed in January and I started taking Plaquenil in March. By May I was feeling great!! And this was a good thing because both of my sons graduated, one from High school and one from college so May was a month of travel, hosting out of town company, parties, etc...all on top of my full time job. On top of all that I had to travel for my nephew's wedding. I was actually feeling great through all of that, I was even exercising! Then it hit. It started with a cold that came on June 3rd but it was just a mild one. As soon as I started to feel better from that cold, my joint pain kicked in with full force...actually cried myself to sleep a couple nights. My eyes got so much worse...even with the plugs in and on the Plaquenil, I felt worse than when I was first diagnosed! Then 3 days ago I got slammed with another cold...this time a really bad one. I feel awful. People keep saying to me, I have never known anyone to get a 2 colds in 3 weeks. Me either. I have my regular appointment with my Rheumy on Friday so I haven't called them, but I have learned a valuable lesson - I cannot take this disease for granted. Even when I feel good I have to guard my health and take care of myself.
I am just hoping the Plaquenil will take over again once I get over this horrendous cold. Is that how this works? Will this flare just calm down and I might feel good again like I did in May? I know I over-did. :'( Thanks for listening...most people in my world really don't understand. How could I go from conquering the world in May with the medicine working to feeling like I am 90 in June. That is Sjogren's I guess.
Oh Missy!
I hear ya! Yesterday I was wondering if I dare to post on here that I'm feeling pretty darn good and working full time (outdoors) going door to door doing a survey for the University of MN.
The humidity is as near 100% as it can be without actually raining and the temps are near 90 degrees. And the SKEETERS! OOOOOfdah!!
But somehow I feel okay!!!
Thanks for your story and the reminder to rest between periods of activity. It's just so tempting to DANCE when you feel good.
Janna
PS I pray you get over this and begin to feel better very soon!
Thank you Janna!! Now if I can retain the lesson learned and follow with wise moderation! I am so glad you are feeling good and I hope it continues. 100% humidity wow, I live in Colorado so don't see that!
oH MISS MISSY,
Yes, pretty much that's how it goes. it's so dang frustrating. You feel "normal" and think you can do whatever and it comes back to show you otherwise. ??? My family (ie husband) gets frustrated too. He thinks I should never have another "flare" and if I do, the Dr is doing soemthing wrong. Can't seem to get it in his brain that it is really really really never going away either
Hugs,
other Missy ;).
Quote from: missyb on June 24, 2009, 08:19:59 AM
oH MISS MISSY,
Yes, pretty much that's how it goes. it's so dang frustrating. You feel "normal" and think you can do whatever and it comes back to show you otherwise. ??? My family (ie husband) gets frustrated too. He thinks I should never have another "flare" and if I do, the Dr is doing soemthing wrong. Can't seem to get it in his brain that it is really really really never going away either
Hugs,
other Missy ;).
I hear you. My husband always asks when I go to the doctor are they going to do the antibodies tests to see if they are gone now. :-\
Ha ha, my husband tries so hard, but a great example is last week, my left hip was really painful, so I was babying it and had a little limp, sort of sympathetic mixed with exasperation, he said, "What is wrong with it? I looked at him and said, "Um I have Sjogren's." On good days it is easy for him forget I guess. :)
Missy1306,
I'm glad to hear that you were feeling so good for all the important events that went on in May.
Sorry you are feeling under the weather right now. Colds should be in the winter months only . . don't ya think??!! My hubby decided to share his cold with me too . . . grrrrrrr. My hard part is the swallowing and sore throat. I just keep sipping water and tea all day long.
Hope your cold goes away quickly.
Good luck with your Rheumy app't. on Friday.
Take care,
Bucky
JannaLee,
I thought SKEETERS were MN's state bird!!!! ;D ;D
Bucky
Bucky I completely agree! Summer colds are the worst!
I do not have to much trouble with dryness in my mouth and throat - my big problem with dryness is my eyes and sinuses and I know the cold medicine is not helping. I am just trying to go overboard on the drops and that helps a bit.
This too shall pass, thank you for your encouragement.
I know, it is hard for them. Always one thing after another. When they see you feeling well, they must think "oh good, that's fixed" so when it comes backthey think someone screwed up because that was supposed to be "fixed"..
Missy - good luck and i hope things improve for you. I'm still jealous you had such good results with your treatment before the cold. As for your husband, hey...it's a guy thing! lol... actually, the same happens for me with my wife as she expects the meds should be having better results for me.
Dave
It's almost scary how you can cruise through here and read your own life sometimes...I have been going through the same thing. I went on plaquinil in December, by March felt great! Started having trouble with my teeth - went downhill again. I got over that, and spilled my meds, got them all mixed up and in the wrong bottles - wasn't getting the plaquinil - bottomed out again. I got over that, and now yesterday and today have come down with a summer cold (NOT FAIR - cold weather is for cold's!) and now I feel like I have never been on the plaquinil again. I am exhausted, shaky, nauseous - a total wreck! Man, I get tired of this up and down stuff. Like you said, we just have to remember to take it seriously - it is formidible when it raises it's ugly head. When it's quiet, you get to thinking it's not so bad...I can handle this. That's when it kicks back up and shows you what for! My husband is actualy better about it than I am. I will feel pretty good, and be buzzing around, and he'll say " you had better slow down before you flare again". He can see it coming on before I do. No suggestions or help - just kind of seeing my life in yours...
I love the reply "um I have Sjogren's"that's the exact answer I have been looking for when my DH asks me what's wrong.Right now I mumble my back hurts,legs ache,exhausted ect. and it leads to why is that or what's that about.Not a conversation I want I was just talking out loud.
I just told him yesterday I feel this summer is going better then usual.I guess he didn't agree due to his tone when he asked do you really think so.A bout with vertigo followed by a bad cold along with insomnia and various aches and pains in the evening I guess it would seem strange to say that but yeah I really think I'm doing better this summer lol.
Ruby
I agree that the ups and downs are the toughest part. Somehow when I feel good I feel like I better get every bit of living in that I can, like I should catch up. But boy does that backfire.
That's why my husband tells me to SLOW DOWN - LOL - He has seen it too many times!! Somehow, I think it will be different this time. (not based on past experience - just wishful thinking!) Oh yeah, he's right. I have to jus stay with a steady pace even when I feel good - so that way I can continue to feel good for a while.
I'm in the same boat as DK! I want to do EVERYTHING (which, I am fully aware, is how I developed each and every one of my delightful autoimmune conditions), and my husband is the one to tell me to slow down.
A friend invited us to his show in NYC on Friday, and I said, "Let's take the train down for the afternoon, hit a museum, grab dinner, and see the show." He reminded me that, with plans to go to the theater on Thursday night and spending Saturday and Sunday at an event out of town, I should really take a day off in the middle. It disappoints me that I can't do everything, but he's right--even when it's fun stuff, not stressful, it can be too much for me.
I think the swine flu is still out there. Or maybe you got a secondary infection after the first cold. Take it easy and get better. I'm glad you are seeing a doctor Friday. A cold or flu can really set you back. If someone sneezes around me I panic and get out the hand wipes. I think my biggest fear is getting a virus. A couple of years ago I caught something and developed pleuritis. It caused permanent damage in my right lung. We have to be careful to pace ourselves and rest and take this seriously. I hope you feel better. I may get a hand wipe for the computer after this.
KathyL
KathyL,
<<I may get a hand wipe for the computer after this.>>
Cute! Cough, cough, achoo . . . yes, I think you better!! My hubby still has a cold he "caught" last week. I kept asking him "please cover your mouth when you sneeze, I don't want your germs!". I am constantly washing my hands. Well, guess what . . . . thank you hubby, I now have his crummy cold!! GRRRRRR My throat really hurts today - heading to the store for some popsicles. ;D
What I really want to do today . . . crawl back into bed!!
Stay well everyone!!
Bucky
I am sorry for you Missy. I'm not yet on Plaquenil, as I still have a month to wait for my first rheumy appointment. (I'm on the cancellation list, as if...).
I understand infections such as colds, flu and bronchitis will really set us back. Before I was diagnosed, the pain came and went, but when I got a bout of bronchitis and pneumomnia, the pain came in like gangbusters, and I thanked God for the cough syrup with codeine, as it helped. When my bronchitis got worse, I went to the ER (we were actually out of town when this happened), the doc there gave me steroids. BA DA BING! ALL my pain went away. I felt like I was 16 again. The pain stayed away for about 2 weeks, then POW, it was back.
I was in light to moderate pain till 4 days ago, when severe pain hit, and hit hard. Rib cage pain, back pain, and what I beleive to be peripheral neuropathy all over my legs and hips. I have cried at night too. I felt so optimistic that this would not get me down, but these days it is.
I am taking some of my husband's pain meds because I can't take the pain... it is very painful to me now. The OTC ibuprofen, Naprosyn, etc. are not even touching this pain. After the pain meds kick in, I can do a little like some laundry and dishes. Even my skin hurts on my back and I don't want to lean back in the chair or feel clothes on it. Waaahhhhh. I am such a baby.
Missy,
I came in from the rummage sale my DD is having here to sing the blues to you all of how icky I am feeling and here you already started the song! :P Ugh, I have been way over doing as well as live has been going in over drive for us with health and my dad's cancer. It has been over a month of over doing and low and behold, I woke up today feeling like I had been hit with several 2 by 4s. ugh.
I am not taking anything yet as my Dr started me out on Lyrica and I had a strange reaction to it. I have an appointment in a couple of weeks and when I talked to my Dr we left it as if I am doing OK we'll wait till i see her. Other wise call with any problems. If i do call, it has never take more than 2 hours before some one gets back to me.
My right wrist is just killing me and my right side of my face is hurting pretty badly too. My neck is killing me as well, of and the IBS is flaring bad too. Life is so much fun with SJS! :o
But I am thankful as this too shall pass. But till it does it sucks! LOL Strange thing is my puggirl dog who also has an AI disease is flaring too! Is it the season, weather or what???
Well I am off still singing the blues of pain while sitting at the rummage sale some more. I'll say a little prayer for ya and one for me to place it all in God's hands. Plus I am going to take a pain pill! ;D
Lovingly, Kimi
Crabcakes you are not a baby!!! Pain is not fun! Sometimes I think we can be too hard on ourselves for feeling bad!! Sometimes we just have be OK with the fact that we having unhappy moments in our disease. I am so sorry for your pain. Please try to take it easy and take care of yourself.
Kimi, yes this too shall pass, but it is hard isn't it??? I will for sure say a prayer for you and thank you for praying for me. Take care Kimi,
Love, Missy