Jeri,

Your computer caught the virus too???? (haha) Hope your cold is better! I caught your cold virus last week-end too. I've been sucking on my 'cold eeze' faithfully. Mine has moved to my sinuses and I can't take any decongestant cause of the Raynauds.

I've been having a lot of pain and heaviness in my legs, not joint pain. Does that sound familiar to anyone? Also, my wrists and hands were much worse. I'm beginning to think that it has nothing to do with the Raynauds, RA, or Lupus. I think maybe I need to have them do some tests to see if the carpal t. has damaged a nerve. I heard those are a lot of fun.....they give you shocks and needle insertions from your wrist to your elbow. I declare this whiney (sp?) Sunday!!

One good piece of news....I was on the waiting list at the Mayo Clinic and they called and gave me an appt. for May 1st. Kind of scary too though. I'll pass on all the newest, most effective treatment modes to you guys so you can make requests of your drs. Have a balmy day....the sun is shining in the front yard and I can't tell if it is in the back, cause my 7ft. snow drifts are still blocking my view. Take care, Ann

The majority of my leg pain seems to be a dull, heavy ache in the bone (front of the leg, below the knee). I don't know if this sounds similar to what you are experiencing. It's worse when I wake up (my ribs also feel bruised or sore when I first get up, along with extreme pain in my lower back), but then gets better for a while, then starts hurting as the day progresses. I've tried everything to relieve the pain in my legs, including exercise specifically targetted to the legs, walking, different shoes, sleeping in a different position. Sometimes the pain becomes so unbearable (usually towards the end of the days) that I have to lay down. I don't know what this is related to since the doctors are still performing tests to see whats wrong with me.

[This message has been edited by Ready (edited 03-20-2001).]

Hello- back again,
Explore fibromyalgia on the leg pain. I have had 3 bouts of trochanteric bursitis since being diagnosed. It mimics joint pain, but it's a totally different thing than lupus pain. Since the lupus is beginning to come under control by methotrexate, I am experiencing a whole new set of pain- from the FM. I feel more flu-like and the FM is worse on rising and in the evening from what I've read and personal experience. My rheumie ssays SLEEP is the #1 way to control FM and I never seem to get enough- my fault in poor prioritizing.
Anne and Ready- thanks for keeping us going.
Ready: Yea!!!!!!!!!! we have an "in" on the latest with your Mayo info! Networking really helps keep us up on these diseases, cause we have a life to carry on- above and beyond the effect of the conditions.
Ann- I have the same heaviness, I am attributing it all to FM, altho when I awaken after a pretty good sleep, I am still sore and stiff. It gets better faster, tho, if I HAD a good sleep. No real work-around and I don't see my doc until the 2nd of Apri.
Hugs all around
Jeri

It sounds like we all have 3 different types of leg pain. Jeri, for the FM, I know there aren't any specific blood tests or whatever, but did your Dr. put pressure on certain places on your body to make the dx.?

Also, I seem to be so much better this week(except hands), is it possible that the plaquenil could work in a few days? I know they say it takes from 6 wks. to 3 months.

Have to get back to work, I'll check with you guys from home if I can. Have a sunny day, Ann

Hi Ann,
The plaquenil began working, I swear, within days and began to gave me the first relief I'd had in months.
The doc has added methotrexate to the plaquenil, cause the plaquenil-alone worked great for about 2 months, and pretty-good for another 2 and then it started to be less-than -what I needed. I have been on methotrexate about 6 wks now- I've lost count and I believe that it's working cause I am reducing my prednisone at the same time and the symptoms that I am experiencing are brand-new- most of them FM symptoms. That a new scene cause I just found out I had FM along with the other stuff. The joint pain and overwhelming fatigue masked any other pain that I was having. Nothing is helping the brain-fog that if affecting my typing.

:-)

Hope you gals had a good day today. I shoped with husband and oldest daughter and 2 grand daughters and bought a doll house for all of us to play with. Off to a new Bible study tonight with friends and family. I LOVE my Wednesdays off- I find I have trouble working more'n 2 days straight cause my schedule is so goofy. The mid-week break is refreshing to body, mind and soul.
Here's hoping y'all will have a quiet evening.
Jeri

I guess I spoke too soon, by Wed. evening I was brought down. It's still more the other pain than the joint pain. I'm trying to catch up today, both rest & work. Do a little, rest a little. The work 2 days, off one sounds perfect! Mid week everything goes down hill till I can rest up on the week-ends.

Hope your daughter appreciates the wonderful grandmother her kids have.

Could you re-check that question I had on my last post about the FM dx.....thanks, Ann

aNN, i AM SO SORRY, i ANSWERRED YOUR fm QUESTION IN MY MIND WHILE i READ YOUR POST THAT NIGHT, BUT i FORGOT TO TYPE IN THE ANSER! wHAT A MESS! Can't you tell it?
I just looked up to the monitor screen and realized I'd left the caps-lock on!
Anyway, yes, Dr. Kaplan always touches the FM points when she is listening to me, listening to my chest, etc. I didn't realize what she was doing the first couple of visits. She started asking me if it was tender, here?... here?... there?... I'm not sore in all the points, tho. she said- when the ones on my chest below my collarbones really hurt- that I had FM and that they'd be really tender if I was fatigued and not sleeping well. I was also encouraged to learn that one of the sets of FM points is at the base of the skull. Just before my Mom died in May I was really sick with what I thought was the flu- I had the most excruciating pain coming from those two points. I kept saying it was a tension headache- but I knew it wasn't a headache. Now I know what that was. Of course, there wasn't anything I could have done about it, but at least I won't be so scared and confused when it first hits.
I have no idea if the methotrexate is supposed to affect the FM, but since it started (or seemed to begin) to work on the Lupus pain, the muscle weakness and pain in my thighs is worse. May be just the trochateric bursitis I had in my rt. leg. Maybe it "spread". haha
Actually the diagnosis of Lupus was easier to take cause there are drugs to control it. With FM, there isn't a lot you can do. I feel awful that I thought one of my firends was a hypochodriac when she told me she had FM in the last year or so. No wonder she seems flaky- she's desperate for some kind of relief from the pain and for someone to take her condition serious. For now she's playing around with a massage therapist who promises "toxin relief from her lymph nodes." -whatever that means.
What about YOU and FM, Ann, are you struggling with it?
Jeri

Who knows what you have with these AI diseases????!! I've been blaming the joint pain on the RA and the heaviness & muscle pain on the Lupus. Now it seems the joint pain is better, but not the other. It doesn't sound the same as the others on the board. Maybe we're just all describing it different. I don't know what the behind the knee pain is. I don't think I buy the dr.'s water theory. I just found out about the FM points from my niece (23yrs. old). She has RA, FM, thyroid, IBS, & carpal tunnel.....just married last month, working full time, very athletic, and hoping to get pregnant. She just went off most of her meds about 6 months ago, except the thyroid stuff, stays away from sugar, red sauces, & something else. Says that's taken care of a lot of her pain. Anyway, my dr. asked if I had ever been dx with FM the first time I saw him. Not sure if he did the points or not, but I think I remember him pressing on the back of my neck.



What I really need to do is quit the smoking!!!! I had myself down to a half pack, but lately it's gotten much worse again & so has my appetite. Smoking is one of the few enjoyments in my life....when I'm happy, sad, anxious, depressed...the perfect best friend that always makes me feel better. Sounds pretty sick doesn't it????? I know all the reasons I have to stop and that I would feel 100% better especially with the Raynauds, I just don't have the desire to give it all up. Still need your prayers, Ann

p.s. I think it's still hard to tell with the FM people. I have a sister-in-law(about 68yrs. old) that says she has it and she just spent several hrs/day sitting in the same position quilting with my mother for about 2 weeks. I think there are truly people who have it that are suffering very serious pain, but without a 'true test' it attracts a lot of the fakes who just need attention. Unfortunately, because of people like that, it casts shadows of doubt on everyone who has the 'invisible' disease. The moral of that p.s. is.......don't beat yourself up about doubting your co-workers diagnosis.

[This message has been edited by Ann S (edited 03-24-2001).]

ANN, YOU ALWAYS BOOST ME UP!
I had a good laugh over your description of smoking. I can identify with you. I was very fortunate to have a good motivation 8 yrs ago- when my husband went into rehab for alcohol, I quit smoking. It worked for both of us- but I couldn't have done it without turning the craving and all over to God- AND I had to be ready to do it. doesn't work when the Dr nags you or your inlaws whine about yur health, etc. You'll find a right time. I know it's not good for you- but when you have so few pleasures as you deal with the constant grind of pain and limitations- we tend to hang onto something that gives us a little ease.
ahhhhhhhhhhhhhhh I finally heard what you were saying about the leg pain when you mentioned behind the knee. Mine were killing me!!! They felt as tho something was growing in there! As soon as Dr. Kaplan dx the lupus and put me on prednisone- the pain was gone! So.... I don't think it's FM, cause (I think) steroids don't help that kind of pain (am I right on that????)
I dread going to my internist next month (I put off my appt for 3 wks) cause I still haven't started a walking program and the prednisone stopped my very successful weightloss- now I've gained back most of the pounds and still eating the same! Rheumatologist told me to quit being concerned- it was water retention from the prednisone. I just don't want to hear any doctor being critical of anything I've been doing- cause I've been VERY compliant even when I didn't want to! waaaahhhhhhh Man, what a whiney baby. haha
I've done way too much today- we'll have our son-in-law's brother in from WI tomorrow and I decided about 6pm today to clean and overhaul the den. Now is that stupid or what? All the time I'm cleaning and sorting and moving stuff around, I am thinking: "Why are you doing this tonight?" I STILL don't have a reasonable answer. Well, anyway, the den looks nice and it's clean and the grandbabies can find their toys, now. :-)I need a personal masseuse right now to get the kink out of my neck and help me hobble to the tub. Do you find that some days the limitations seem almost as though we made them up ourselves. That is until the next day when we are confined to bed????
You were right on the mark about some people claiming these AI diseases, but don't seem to have them. I have someone very close to me (but may be lurking on the board) who gathers all my descriptions and them claims to have the same thing. I think that person needs to hear how I describe things so that the description can be used at that person's doctor. The person slipped one time after telling em that they had been dx with lupus and mentioned what the ANA titer was and then said that the doctor didn't believe her symptoms with such a low titer- probably ran the other tests that showed that she wasn't in a flare either. I am careful when I tell her stuff now, cause I am tired of the hypochondria. I get so aggravated with her until I remember how lonely she is and how jealous she is of the closeness in our family and the wonderful support that I get. Makes me pray even harder that she be healed of the overwhelming need for attention of this sort.
It's goofy, isn't it?
Or is it me??????????
ha
Jeri

Jeri,

You just whine all you want cause that way I don't have to feel so guilty and self-absorbed the next time I do it.(hahaha)

I wonder if the plaq. will eventually work on the knee pain. I'm not on the pred.(I refused) I wonder if the plaq. can make you more anxious thus causing the need for eating & smoking more. Gotta have something else to blame it on. The Dr. never got on me about the weight..... I'm just not happy with myself, thus making my overall outlook negative. Sound like a real psychologist, huh? Pretty good for a person who struggled all day making any mental connection work. It was awful.....I work at a school and once those kids see you draw a blank or a wrong answer, they really lose faith in you fast. I wonder if this is what a senior citizen goes through with altzheimers(sp.?). Hopefully they don't know its happening like we do. Thanks for being such a friend, Ann

Hi Ann, I have been awful staying away so long. Been a busy few days- a temp shange in my schedule so I could attend a Bible study taught by a dear old preacher we met a few years ago. he is such a wonderful teacher that I rearranged everything so we could make it all 3 nights.
So... enough excuses. I missed you and was happy to see your post when I finally got back to the boards. I believe that the plaquenil will do great- it just doesn't give you immediate results like you experience when they bump it up with prednisone. the plaquenil held me very well for a few months at a very low dose of prednisone (4mg- and that's the level that the body is supposed to produce itself). I had a bout of pleurisy and had to go back on higher pred and never really got back to the "good level" again. I'm doing better and better, I believe on the plaq and methotresxate. I have the pred down to 8.5 mg today (cutting by 1/2 mg/day). I just realized last night in the middle of prayer that I was "hanging onto" the weight stuff. I had handed all the disease over to God, but for some reason (pride probably- vanity, cause I'd done well with losing weight at first) I was getting all worked up over a few pounds and getting scared over what the internist would say: would he humiliate me; would I get mad; would I be embarassed. WHAT A GOOF! Well, I am about over that nonsense. I am not "happy" that I've gained back almost all of what I lost, but I am sticking to the healthy eating plan the dietician laid out for me, my blood glucose levels are great and the heck with all the rest of the concern! At this point it's all I can do.
You mentioned something about the plaquenil maybe making you feel anxious. I don't know that that isn't a side effect. My bottle says: may cause drowsiness or dizziness. That tells me that it can affect you- and eveyone's reaction to chemicals is different. We are living proof of that. I know that zyban affects some brain receptors to reduce the craving for tobacco- perhaps the plaquenil does, too. I'll keep looking for cautions on the drug.
I don't think we are to play like we are in a fairy-tale and ignore what's good for us, but I don't believe that you need to beat yourself up over smoking right now. YOu are still dealing with pain and it's doubly hard to stop during a pain crisis. The stress of dealing with the pain is enough to overwhelm you. Trying to break an addiction as hard as nicotine at the same time is too much punishment. I remember! I enjoyed my cigarettes, too, and would go back to 2 1/2 packs a day if I picked one back up. The mental is as strong as the physical. The right time will come and you'll know it. My husband still smokes- he's dealing with post-shingles pain (for the last 4 years.)
What's been going on with you? I am trying to plan a very brief trip to MI to visit my granmother on her 95th birthday in May. The kids have a tent-camping trip planned for the whole family the middle of May. I need lots of time for stress-free planning. Guess what, I'll bet I don't get any! haha
Sound familiar?
Jeri

Geeeez Jeri, I hope that tent/camping trip includes a real bed for you. Otherwise, you'll need a wheelchair equipped with an IV for painkillers for a month after! Some mornings I ache so bad from just accidentaly sleeping on my arm and that's with a good mattress. MI is getting pretty close to snow country...I'm sure I'll still have my snowdrift in the backyard by then. Oh well, that just might take care of the dilemma about whether to plant my garden this yr. or not. Say, what happened to our other friend from MN? remember?

Anyway, I had one more day of solid mindlessness yesterday, accompanied by severe leg pain. But, today it's much better. Right now I seem to be going through one crisis after another.....could have something to do with why my mind is so mixed up. First my daughter was planning to go to Argentina in July to study for fall semester. She started planning this last summer and I thought for once she was 'on the ball' and I wouldn't have to pick up the pieces, but......I don't think, even with my help, that she could get the Visa nonsense straightened out. A full page of things she'd have to get like a local & national police background check, a psycho/medical report, birth certificate, etc. These all have to be done in Spanish - not even regular Spanish cause their Span. is different. Now she's switched to Ecuador and a totally diff. program and requirements and I have to send a big deposit already and she only had one day to check it out, make her decisionn & apply. That day also included classes, 2 workstudy jobs, and softball practice. Tonight we had a new crisis, the upperclassmen do a lottery to pick housing at their school. She said she was going to live in an apt. with 3 others on campus for next spring and it was all set. Well, the night of the lottery is here and she just found out that everyone that was planning to live together are all going to be studying abroad the same semester. So, they won't grant them a lottery #. Then she says she could live off campus in a house with a room to herself with a bunch of other girls. But, she only knows one of the girls and that one not well. Of course, all of this needs to be decided and agreed to by tonight!!! Sounds like the makings of many more crisises to come. Now to top this all off, I get a call from my 88yr. old mother yesterday morn just as I'm leaving for work and she's crying. She's has a history of heart problems, including a quadruple bypass, and she tells me she's having severe chest pain episodes about 3-4 times/day now. She lives alone in her own house yet. The reg. Dr. gave her a nitro patch to wear last week, and she already had nitro pills, and none of that seems to help. She says the Dr. says there's nothing more they can do. When I got back home from work, I did some research, made a few calls to my sisters-in-law, and I think it's all a mis-communication between the Drs. and us. I think the Heart Dr. was referring to another problem she was having last summer when he said there was nothing they can do, but my in-law disagrees and doesn't want to make an appt to see the heart dr. The heart dr. has no idea that the severity and frequency of these pains has increased so much. I live 2hrs. away and my in-law lives in the same town!!!!!! I'll give her till Thur. to change her mind and see it MY way and then I hope to have enough energy to start a family war if necessary. (There's 9 of us children, not including the in-laws)

What's the lesson you learned on the board to day, Jeri?..........(hint-don't ever ask Ann what's going on in her life.) If you went out every night this week, what happened to your company that you cleaned the den for?

Re: the smoking... the circulation in my hands & feet has shut down so much from the Raynauds, and the smoking is like pouring more gas on the fire.

I really tired myself out now. Hope you had a good day with another one to follow. Ann

WHEW!!!!
I knew I forgot something when I wrote and that was to comment on your brain fog- to tell you that I was really noticing mine lately. (maybe that's a good sign- as long as we notice, it's okay haha)
Re the den: they came, had a good time, I was less tired that I thought I'd be- but oldest daughter confronted me (gently) on Monday and aid she noticed I wasn't myself and that I needed to do a better job of communicating my needs- even like, "kids, I could use some help vacuuming.- that they wanted to help, but didn't want to step on toes, or mind-read." What a gem, but I didn't know tht I didn't seem myself I just had nothing much to say. I was cheerful.... haha I'm making excuses for doin too much and then being wrung out to the point of mindlessness.
The camping: our babay son (the youngest twin) inherited my Dad and Mom's travel trailer- he's taking that so newly pg daughter-in-law and I can sleep in comfort. What a sweetheart- unless he's kicking thte 2 whiners out of the campt and sticking us in the trailer. I refuse to overdo, but want to test some stuff on this trip. Like "just how much can I do on my own in an alien environment? (also known as:How much loafing can I get away with) :-)
Your LIFE! this week it's been one big crisis! I am so glad that my kids are grown- to be sure, we ahve crisis, but they are ususally at their house. There is an advantage to that. Don't let the inlaws get away with dumping this on you- my mother went thru the same miscommunication stuff- they don't want to "bother" the doc and say all the wrong stuff. My mother died way too early because family close by didn't monitor as they told me they were and my mom pulled the same stuff with the doctor.
Although I doubt if you can pull it off THIS week, I am hoping that you wil have a peaceful evening and rest-of-the-week.
Jeri