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3/10/08 stop all supplements and advil 10 days before surgery
3/17/08 stop mtx….3/20/08 feeling so good want to cancel surgery..go ahead and have the carpal tunnel and synoectomy..sent home with vicadin and some antibiotic
3/21/08 spring break, take kids to florida:cool: to visit in-laws and recuperate. take vicadin 3 days,continune mino mwf 2 x a day. except for right hand/arm because of surgery i am feeling really good..:roll-laugh:.left hand strong..knees/feet not hurting,dare i say i felt normal,of course i did say it so i jinxed myself:shock:
3/28 come home to ohio feeling wonderful:),within two hours, left hand stiff,cupped…knees/feet stiff,hurting as usual.:crying:..couldn't believe how quick everything went downhill
i have never noticed any difference in my symptoms from weather before…so many variables, any ideas on what went wrong:headbang:
thanks, sorry so messy,hard to type
sue
Sue,
What a letdown, so sorry to hear of this setback. Maybe it wasn't the weather. It could be a delayed stress response to the surgery/trip. I had surgery 10 yrs ago, and 2 weeks after the surgery my left arm began to hurt so badly that I thought I was having a heart attack. That was when I was dx'd with FMS. It gradually went away but returned in other places. Any kind of stress, physical or emotional, lowers our immune response; maybe the bacteria took advantage of this and had a party. Give your immune system time to reboot, hopefully this will be short-lived.
It's tempting to try increasing the abx, but that might create a strong herx and make it worse. The mtx is probably slowly losing effectiveness as it is leaving your body, and your not taking motrin either; it sounds like you stopped taking those abruptly. I understand that you had no other choice because of the surgery. That could explain it as well. Maybe you should take the motrin, just so the abx don't have to work as hard to get to the affected joints. I know it's frustrating, but I think it's a temp. setback.
linda
Hi Sue,
I live in Canada and just two years ago took the kids on their dream trip to Disneyworld in Florida. I was absolutely shocked to find how much better I felt in the sunshine/warmth. I walked every day on all our day trips of at least 6 hours each day, no pain, stiffness or fatigue and I must have lost 5 – 8 pounds in water alone just stepping off the plane in Florida. The lack of swelling was incredible. I cried when it was time to go home. By the time we hit Toronto (3/4 of the way home) all my usual symptoms were back. Now I have to go to Florida every winter no matter what! Clearly the weather had a dramatic effect on my symptoms and it was great for my depression as well to get some rays. My Testament to the power of climate.
Cheers,
Steph
Wow, Steph, well done doing so much walking around in the Florida heat…that's some story! Have you ever had your different D-levels checked?
Peace, Maz
Hi Maz,
By different D levels do you mean my Vit. D level? If yes, then yes I have and it's low and my Vit. A is high (go figure). There is another Vit. D level that you get checked too isn't there? Will get all checked again shortly.
Cheers, Steph
Hi Steph,
On the discussion thread started by Casey a while back, entitled, “Looking for some insight…and Vit D info from MPers”, there is some great information about the different Ds to have tested and bloodwork reference ranges to aim for (in Canada) for these.
http://www.rbfbb.org/view_topic.php?id=41&forum_id=1
Casey has been making an in-depth study of Vit D and may be able to offer you better insight than I at this stage. She's also a Canuck (me, too, though I'm now living in CT), so may be able to guide you on how to go about testing up there.
Just seemed pretty synchronous that you did so well in the sun….apparently, Vit D isn't actually a vitamin, per say, but has steroidal effects on the body. So, as I understand it (and my understanding is limited about MP at best), the MP protocol focuses on getting the different D's into balance, as an overabundance of one (though producing temporary feel-good sensations) can actually impede progress by suppressing the immune system from doing its job. So, according to MP, what you experienced in Florida may have been a temporary period of immune suppression that gave you such relief. Kinda depressing when you think about it…I'm a sun-lover, as well. :crying:
Sorry I can't be of mcuh help with this…while MP is definitely in the offing when I try later to go for the final pathogen “kill”, I've only done some cursory researching on it to date and just got a bit too bogged down with all the science at this time.
Peace, Maz
Same thing happened to me last year when I went to Florida in February for a week. I didn't even know I had scleroderma–lots of energy, no joint pain, lots of sun every day floating in the pool, outdoors all day long. I had even forgotten about the Raynaud's until I stuck my hand in the freezer at the grocery store, and even then it was only a brief attack. My husband had to drag me back on the plane to come home to Indiana.
Does sound like the Vit D is messing with us…….kim
With all due respect ladies…. I live in Florida and have unbearable pain most of the time. :crying: It travels from one spot to another and just settles in for however long it wants to. Right now it's in my shoulders and upper arms. Some nights I can't even turn over. I can get sun any time I want. It doesn't seem to help. I have upped my minocin from MWF's to MTWFS and am working it up to once a day (100 mg). I'm at my wits end with what to do. The pain at times.. just too much.
I am seeing a DO this week and am placing SO much hope in this visit. He does Osteopathic manipulation. Keeping my fingers and everything else crossed.
Good luck to all of you… I keep everyone in my prayers.
I didn't want to be a party pooper, but I live in Az and am suffering as well. Altho, the first 2 times we lived here (military family) my PsA did go into complete remission. That was over 15 yrs ago. Thinking that the same thing would happen again, I moved back here 2 yrs ago- and am the sickest I have ever been. Maybe the disease has just progressed too much for the sunlight to help. I do still think that weather plays a role, but like everything else with these diseases, it's different for everyone.
I grew up in MO, with asthma; I would ALWAYS get sick the day before a storm front moved in. My parents used to plan their weekends around my health.
linda
It's really strange that those who live in sunnier climes don't seem to have consistant relief from symptoms when those who just visit for short periods seem to experience spontaneous relief. There must be something to this.
Although, taking this a step further…maybe D, being a seco-steroid, acts much like prednisone, which also tends to wear off after a time? Maybe someone who knows more about this would kindly enlighten us all.
Peace, Maz
so sorry for allthe suffering, nan i am surprised you are not feeling better with starting the ap so shortly after dx, good luck with DO, i know what it's like to put so much into “the next visit”, i hope you are not disappointed.
we have traveled to florida every year and this was the first time i felt normal, there were so many other variables with this trip that i amsure it was not only weather related. i should be happy i had a good week instead i feel it is almost harder to feel good and then go “back”….make any sense?
we live close to high tension wires and my husband has always been convinced this wasthe problem as i got ra about a year after moving here…i never thought much about his theory but i must say i am starting to wonder. hard to type so can't do any research on this theory yet.
praying for relief for all those who suffer:crying:
sue
Hi all,
I had the same thing happen to me. I was in Johns area, California one week ago and immediately was able to walk more, Up and down stairs , lots of them on a cruise ship. Also felt so great in the sun with more energy and less stiffness. I am 3 months on the mino and it is a new day every day. I don't know how each day will wind up but am trying to live in”the moment more” and worry less about “later”. Of course that's the mind set you need to embrace to cope. This board has been helpful. Thanks!:P I now wish I could shed the prednisone blimpee, 22 pounds. I am pretty vain and don't like this aweful weight gain. I am not on the prednisone, and have been off for one month. I am hoping for good weather so I can get walking this off. Things could be worse. Just 3 months ago I could barely get down the stairs. I am still not”normal” but I sure am doing better.:roll-laugh:
you have a good attitude patti, i try to do the same….you really learn to take one day at a time. i also try to remember all the soilders that come back with missing limbs, this makes me remember to be grateful, my limbs may hurt but they are there.
good luck,
sue
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