# Update



## weener (Aug 15, 2000)

Hi everyone:How is everyone doing? I haven't seen some of our regulars on the board in quite some time. When you get a chance just drop by and let us know how you are. My last visit to the rheumy was in February (check-up) and she suggested physio-therapy using the TENS machine. Well, I had my appt. with the physio therapist today and she is starting me on a program next week in hydrotherapy. I will be doing exercises in a pool and will attend classes 2x a week for 3 weeks and then 3x a week for 3 weeks. After that if it still doesn't help then she will put me on the TENS machine. Has anyone done this type of therapy before and did you find it help the fm? Gosh, I haven't worn a bathing suit in a few years, so I had an excuse to buy a new one. I've gone up l size. Eeeeekkkk! I'll let you know how things progress. Don't forget to drop in and say hi all you fm pals.


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## moldie (Sep 25, 1999)

Hi weener. Sorry I can't help you out with any of the therapy you are trying because I haven't tried it.It finally has gotten nice the last two days here in WI (in the 70's), and I have been outside weeding. Don't trust it enough to plant annuals yet. I love it when it is warm and dry. The only problem is, sometimes I tend to do a lot of physcially exerting things like digging and carrying a lot of heavy stuff that gets me into trouble, because I enjoy gardening. I'm really sore after yesterdays weedeating (first time this year). Good for toning up the arms though. I'm finding it harder and harder to get up off the ground/floor after being in one position too long. Also bending my head down for any length of time can be a problem. On the weekend I was on the floor sorting out old pictures at Mom and Dads and my neck and shoulder have been hurting ever since. I got tons of stuff done yesterday (lots of over-do cleaning besides the weedeating), but today I was too sore to tackle any kind of real work but did some grocery shopping and laundry after tutoring.I am still a little constipated after having diarrhea a couple of weeks ago (I think from bad bag lettuce - never felt such pain since child birth!). Now, aren't you sorry you asked?


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## Guest (May 11, 2001)

Weener and Moldie--HELLO! And to everyone else, hello, too!Aahhh, an update......Well, as some of you know, I am doing the Antibiotic Protocol for my fibro and lupus. When I went in for a checkup in March, the doc put me back on Zithromax and I have been feeling pretty crummy since. It seems the zithromax stirs things up a bit more than the doxy which is a good thing but I am waiting with bated breath for this herx to leave. My blood work was about the same.My TMJ has been a bit more annoying than usual, my sides feel like tight little knots, and I have alot of fatigue. But, I'm getting on with things. I don't have time to slow down too much. I just take things very carefully.Hope this note finds everyone doing okay. It's Friday and payday. My girl and I are going to have a girl's day tomorrow. My mother-in-law is coming in town on Sunday so I get her for Mother's Day which I am thankful for. What are y'all doing for mother's day? Talk at y'all later. Lynne


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## Debbielee (Jun 14, 2000)

Hi ALL Lyne keep us updated on the AX therapy--i am very interested as i am still going around about more for the Lyme.As for me--well Dr. Rhuemy--nuero--GP are all in disagreement regarding the Lyme and what to do next.2 of them still want the Spinal Tap.The FM is bad for me and i cant help but think it is cause the Lyme is not entirely gone.At any rate--I have put a hold on all of it.Have to go next week for a mammo of the one breast i had the biopsy on--to recheck--this always makes me nervous.Starting Mon. i am going to try once again to work 12 hours a week. If that doesnt work--Dr. is willing to go for disability. i just dont want that yet.My new dog is great but i still miss Misha.I wish we could post here more often. Take care,Debbie


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## weener (Aug 15, 2000)

Moldie, na, I'm always happy to hear from you whether it's good or bad news. Glad the temperatures went up in Wisconsin 70 degree temperature is just perfect for me too. Not too keen on the humidity. So you like gardening. Me too. I know what you mean about lifting and weedeating. I think the weedeating is too hard on us. I have one of those big weedwackers that weighs a ton. So I made a deal with hubby that I'll cut the grass if he does the weedwhacking. Did you catch "survivor" last night? Not as exciting as the other shows, but at least we got to see a personal side of all the contestants. Are you finally over the tummy problems? (Scary stuff, I had a similar experience a few weeks ago too and also am ibs© now). Have you ever tried that stuff called "Fit" to wash veggies/fruit with? I'm just curious Lynne, girlfriend long time no talk. Sorry to hear that you feeling crummy. Will the herx go away eventually. You've had that a long time. The zithromax is that for the lupus (I'm sorry, but I don't remember). My family doc thinks I have TMJ (I did have it about 10 yrs ago), so I might end up wearing the appliance again. How are the the 3 K's doing? I think of you often and I promise to write soon. Debbielee, I hope the doctors will come to some sort of an agreement and do what is best for you. Are you on antibiotics for the lyme? Good luck with your mammogram next week and your return to work. Please let us know how you are managing.


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## weener (Aug 15, 2000)

I'm back....Sorry I forgot to wish everyone a happy mother's day. I hope it's a great one filled with love & happiness. Going down to my parents tomorrow to celebrate mother's day and my hubby's birthday. Should be a great get-together.


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## Guest (May 12, 2001)

Weener, the zithromax is actually for the mycoplasma infection in my body. Remember, my theory is that a mycoplasmal infection is behind the fibro and the lupus. Yes, eventually the herx will dissipate. It's a good thing as that means the antibiotic is working away at those nasty mycoplasma buggies. It is stirring things up and causing me to feel bad for the moment. Everyone here is well. Hope the same for you. Lynne


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## Feisty (Aug 14, 2000)

Hi Weener!Are you still having trouble e-mailing me? Was wondering 'cause I haven't heard from you? Gee. I wonder what's wrong, that it's not coming through? I'm getting e-mail from everyone else, so it must be something with your ISP or you've got my address typed wrong or something.My update:Same-o. Urologist put me on Ditropan XL to slow the bladder function down and Imipram to help a little more at night and to help me sleep longer. Well, the down side is that both of them caused so much C that I had to quit taking them. And the Imipram did not help me sleep-----it made me hallucinate. Not something I want to take on either count. So, for now, I'm back to frequent potty trips. Will have to call him next week to see if there is something else I can try. It's my understanding that if I don't slow the bladder down, the chronic cystitis will only get worse over time and cause more problems. Ugh! Always something.Went in this morning for that electrode test on my left hand, wrist and arm. Won't get the results until Tuesday. The test wasn't too bad. It hurt a couple of times when he found the "right" set of nerves that are giving me all the pain. Hmmmm. I wonder what that means? The Orthopedist was concerned about lasting nerve damage because it's been going on so long. He was shocked when I told him all the years the other Doctors just kept telling me it was "just the Fibro", or "just some tendonitis" and to learn to relax and the pain would go away! He said, and I quote, "Now how the h-ll did they expect anyone to relax when that person is in pain!" I said, Thank You!I've picked up 3 housecleaning jobs every other week and each one is a 4 to 5 hour job. And then I've picked up one BIG 7000 sq. ft. job that will be a weekly one beginning in late August. I will break it up into a 2 day job. 10 hours straight is just too much. I cleaned the home 2 weeks ago and I was dragging when I finished. I drove home in an exhausted stupor or could hardly get out of the car. Imagine cleaning for 10 hours straight with only potty breaks. From 8 a.m. until 6:15 p.m. Whew!! Paycheck looked awfully good, though!







A friend of mine mentioned the other day that she may be interested in helping me clean the big jobs this fall when the kids go back to school, so we'll see. If she helps with them, I could pick up a few more and be okay, I think. What is the TENS machine? I've heard the name, but don't know what it is and how it works. Let us know how your therapy goes.Have a good weekend.My son just called and said he'd like to take me out to eat tomorrow night for Mother's Day! Maybe I raised him right after all!!!!














Happy Mother's day to all!!!!!!Karen


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## moldie (Sep 25, 1999)

So nice to hear from all of you!Weener, my husband thinks it would be harder for me to mow because: #1 I can't start it - I tried, and #2 The lawn is too bumpy. I'd love to get a riding mower, but hubby doesn't want to spend the money and claims it might tip over anyway, since it is so bumpy. I think the voles dig tunnels just under the surface.We took my Mom and Dad out for Mother's Day last weekend, and gave Mom a perrineal Blanket Flower. My wonderful hubby also fulfilled a wish of hers by fixing her old broken down glider swing that she remembers trying to keep cool in on hot summer days and swinging with her grandchildren. Ain't he just the sweetest son-in-law? Today my husband and sons took me out to eat. My oldest brought his girlfriend (I invited her to come along when I met her for the first time earlier this week). My oldest son, who gave me such problems in his teenage years, brought me a beautiful bouquet of flowers and a bracelet. My youngest son bought me a watch that I had seen in an ad in last Sunday's paper, and gave me a nice card. The watch was a Jaclyn Smith KM one - marquesite (sp.?)-like, which I love the look of. I think my husband gave him the picture of it (and perhaps the money), and he went and got it today. He (my youngest son) just got a job this week, so he'll have more money to work with. I remember some years when I didn't get so much as a "Happy Mother's Day" from them, so this was special. (Maybe my hubby conveyed to them, how I was crying, and how disappointed I was way back when).I put my two cents worth in at the Meeting Place about the survivor show ("Back from the Outback").I've never tried the "FIT" for F/V's. I wondered whether or not it contained citric acid, and that's what I am intolerant too. I am still very C and have to take more stuff than I had been taking for it, and still uncomfortable. Hope it gets back to normal for us soon. Sorry you had to feel my pain!Don't forget to tell us how your therapy is going.M.


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## weener (Aug 15, 2000)

Hi Ya All, I had my first hydrotherapy session today. Got to the rehab centre for my 2:00 p.m. appt. There are 2 therapists that I work with and both are very nice. They work with me on a one to one basis. There were 4 other patients in the pool today. The water is a warm 92 degrees and I could live in that all day. Except I'd probably shrivel up like a prune. I did various exercises neck, upper body and lower back and leg exercises. As usual I wanted to go gung ho and everyone advised me to take it easy. I forgot about the resistance of working in water. I guess I'll know better tomorrow how by body is. When I got home I did come down with a doozy of a headache and neck ache, so I'm not sure if I did too much in the pool or if it's something else. I go back on Friday for another session and then 3x next week. I met a young man (17 yrs. old) today at the pool named Matt. I noticed that he was paralyzed. He had the greatest attitude and was so funny. Making jokes the whole time. At the pool there are a lot of floating devices you work with and the therapist ask me to pass this floating toy boat to the other therapist who was working with Matt. So I push this toy boat along the water and where does it end up - in Matt's crotch. I was so embarrassed, but everyone had a good laugh including Matt. One of the other patients said "that's the way to make friends".


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## Debbielee (Jun 14, 2000)

LOL weener--you go girl







Glad it went ok.I am walking 20 minutes a day and swimming when i can.My mammo recheck was good--thank God







I actually made it through 2 days of work!!!!







One more to go.It hurts but i think it will be ok.We are having a baby on monday--they will induce my daughter then. I will be there.WOW!







No i am not on AX at this time.Debbie


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## Feisty (Aug 14, 2000)

Weener,You are hilarious. LMAO. Sounds like something I would end up doing too!! I'm soooooo good at messing stuff up---I just have to learn to keep the sense of humor going. After all, who doesn't mess up? We wouldn't be "normal" if we didn't!!Debbie----hope all goes well with your daughters delivery. Keep us informed. And chin up----you can make it through one more work day. I know you can!! Go girl!!!!! Yeah!!







My electrode test came back and there are no pinched or damaged nerves in the arm or wrist or hand. It's all-----get ready for this everybody-----FIBRO. Now who ever heard of such a thing as Fibro?!







My Doc said that there is mega inflammation going on and we need to try to get it settled down some. So, he sent me home with some samples of Vioxx and if it helps, he'll write a prescription. Worth a try, I guess. And my feet----he said those big knots on the bottoms of them and in the arches is also from Fibro. I thought perhaps he would suggest support insoles or something, but he said I didn't need them---said my feet would hurt more if I tried something like that since I don't have fallen arches or anything. He is checking into Fibro treatment plans through the Health network that my insurance goes through and hopefully there is something out there. Otherwise, I have to "pay through the nose".Take care everyone.Karen


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## Mio (Dec 19, 1999)

Hi,I have tried hot water exercise (itï¿½s very popular here in Sweden as physiotreatment for FMS patients). Unfortunatly I had to stop because it made my FMS worse. It was in hot water and lowimpact with a little Qi Gong and it was really fun! I know that many FMS patients think itï¿½s helping them, but be careful, take it very slow. Itï¿½s easy to overdo the exercise in the water because you donï¿½t feel when your body get tired. I hope it works for you, as I said I know many FMS patients who think itï¿½s the only physiotherapy that helps them.And my update...Iï¿½t has been a bit hectic. As you know my husband has got a postdoc employment in Canada and we waiting for my husbands work permit. About three weeks ago we got a phone call from the Embassey, they wanted me to do a big medical examination. When my husband applied for temporary work permit he had to write down if any family members had any chronic disease. He said that I had two, FMS and chronic iflammatory bowel disease. He also said that I didnï¿½t needed any advanced medical treatment. As long as I get my steroids, Iï¿½m fine. But that didnï¿½t helped, they was concerned over this and two weeks ago it was time for my medical examination. Everything was ok, I was in good condition except my FMS and IBD, and the physician also confirmed that as long as I get my steroids itï¿½s no problem. BUT there could be a problem anyway, apparently the authorities in Canada are very strict and they donï¿½t want anyone who has any serious condition. I hope they understand that I donï¿½t need any special medical treatment and I wonï¿½t be any "burden".I`m so nervous over this, we are still waiting for their decision. And I know how much my husband want this job, and iï¿½ts so hard to know that this is my fault. If I hadnï¿½t been sick there wouldnï¿½t be any problem...So, keep you fingers crossed for us!/Mio


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## weener (Aug 15, 2000)

Hi Mio:I will definitely keep my fingers crossed for you. I know that the Canadian Immigration department has been under a lot of scrutiny over the past year for letting in some seriously ill people. Both had highly contagious diseases and were not detected. Your situation is different and is under control. Try to stay positive. Are you still moving to Guelph? Love to have you here in Canada, eh! Please keep me posted.


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## Debbielee (Jun 14, 2000)

Hi All,Well i made it--one whole part time work week







Goodness, it is unbelievable to me that less than a year ago i was working 55 hours per week. Sheesh!But it is good to be back at it even in a small way.Karen--its the FM--imagine that!







I am confused---FM isnt a disease of inflamation is it? Everything i have read says it isnt. So where is the inflamation coming from for you Karen?He is right about the insoles--- i have a 300 dollar pair of orthodics that used to be a wonder for me until i got FM and then they hurt







Carefull with the Vioxx---on the tummy.No baby yet--guess they are going to wait till after memorial day now if she doenst go on her own.Will keep you posted.Debbie


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## Guest (May 22, 2001)

Hi Everyone







I've missed you all!! Good idea, Weener, for the updates. I enjoyed catching up from being "absent" so long. Feisty, Imagine that....FIBRO!!







I've gone in within the last week for the big blood workup. I've been having a REALLY HARD time of it. Nothing found... just "my stuff" It can be SO discouraging. I will be trying a medication combo of the Celexa (antidepressant) which I've bumped up and Wellbutrin. My psychologist recommended it, said she had a few CFS and MS patients try it and had great luck. My doc has used this therapy too and those people have had good results. Fingers crossed!Debbielee, I'm anxiously awaiting news of the baby!!







It is ALWAYS great to have some joyful events here on the board.My daughter finished her Freshman year of College last Friday, and left for a summer in Georgia on Monday!!! Her roommate, who is from there, and her are taking it slow and seeing the countryside on their way. It is our first long separation, Marisa was pretty nervous, sad, excited about leaving. Lots of tears on Sunday eve and Monday morn! It is such a great opportunity for her, I think that helped me not be down about her leaving. I know she'll have a super time, once she got going. I WILL miss her tremendously!! It was wonderful to hear from all of you. I REALLY need to just get on the board when I am so down and out, the support here is great. DeeDee


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