Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Hi All, My son is 28 today and he was just dx with stills three days ago. He is in so much pain, it just kills me to talk to him and he is all but crying on the phone about how bad he hurts. Yesterday he actually felt better than he has in months and we thought the meds the doctor gave him was a miracle drug. But, I just talked to him on the phone and he is in as much pain as ever. His most pain is in his feet and ankles. Do any of you have a remedy for pain other than pain medication? Concerned mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011  Vickie  Welcome to our little corner of the web and what I like to call our family  As a parent my self I can only image what you must feel as I know we as parents always want to protect and safe guard our kids but the sad truth is we can not. This is a pain my own mother shares with you as I am the one with stills. I always hate hearing about a younger person being DX with this illness but maybe I can shed a tinny bit of light in the tunnel your traveling threw right now. Normally when most of us have been DZ it has also been when were have been at our worst as in pain fear of the unknown and worry about how we are going to be able to go threw life like this. Well most of us as we go threw time we learn things that help us and us also seem to find things that we can do also. Right now one of the best things is rest and learning just how far one can push them self’s and when to slow down and things like that. Now depending on the kind of pain he is dealing with how some of us deal with things is a wide and varied as this illness is to each of us. Some times some meds work for some but not others and so we go threw a time of trying this or that tell we find what works the best for us. Now for me when my legs back and feet start in I have found eating a banana or two helps a bit and same with a nice warm to hot tub soaking. I also know that many of us like my self are a bit sensitive to weather changes such as rain coming or pressure changes. best thing to do is try what ever you can or that he feels may help sooth him and talk to his doctor or make sure he dose about the pain.  Another thing to do and its really really helpful for the doctors and the person with stills is to keep a journal daily of how one is feeling good and bad and what the weather is if he is running a temp things like that but keep it updated every day and bring it to every doctors visit. One other thing that can be of a big help in understanding both for you and him about him self and stills is concealing that deals with chronic illnesses. See stills as I hope they told you has no cure and is a life long deal. now that dose not mean it will be like it is now for ever as many go into remissions and some stay in them and others go in and out of them but it can help both of you understand the changes that this will bring to you in life .I know I wish I would have done that my self and if I had maybe just maybe my learning curve would not have been so steep and hard  So again welcome and sorry you had the need to look for others like us but were glad you found us.  Hugs   The  Redneck  Marty G      I watch the sands of time run threw the hour glass of my life knowing I can not change what has passed. All I can do is live for today and hope for tomorrow and that it's a better day then the one I am leavening here today As I move into the one filled with hope that’s called tomorrow. Marty G 3/29/2011 To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Hi Vickie, My 22 year old daughter has the disease. I know what you are going thru. Feel free to contact me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2011 Report Share Posted May 1, 2011 Thank you everyone with the advice and well wishes. I will be sure and pass the information on to my son. I have an auto-immune disease myself and I am on another yahoo group for that. These groups are the best, they sure do help and keeps a person from feeling all alone with uncommon diseases, etc. The doctor put my son on prednisone and a drug called Methotrexate. He takes two pills once a week of the Methotrexate and the pednisone every day. The doctor told us he would have to come off the prednisone but it was needed now to stabilize things. Again, thank you and I will be checking back regularly. Vickie > > > > Subject: New to group > To: Stillsdisease > Date: Saturday, April 30, 2011, 2:08 AM > > > Â > > > > Hi All, My son is 28 today and he was just dx with stills three days ago. > > He is in so much pain, it just kills me to talk to him and he is all but crying on the phone about how bad he hurts. Yesterday he actually felt better than he has in months and we thought the meds the doctor gave him was a miracle drug. But, I just talked to him on the phone and he is in as much pain as ever. > > His most pain is in his feet and ankles. Do any of you have a remedy for pain other than pain medication? > > Concerned mom > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2011 Report Share Posted May 1, 2011 Vickie, The predisone is typical for dealing with an acute flare and alot of people take it most of the time (I am one of the few who does not) Methotrexate is a good med and one of the most common DMARD's prescribed. It unfortuantly takes about 6 to 8 weeks (sometimes a little more) to start seeing the benefits of this medication though. If he is taking two pills a week (I am assuming they are 2.5mg pills as that is the standard) it is a pretty low dose (I take 8 pills a week myself but the dosage varies person to person. My starting dose was 5 pills a week and was increased after about 6 weeks) As far as pain meds since you didn't say which one they gave him, but most have tylenol in them I would also suggest taking ibuprofen as well to help with inflamation and pain (trust me every little bit helps) this will also help if he is having fevers as well (very common and my personal worst symptom) if his pain med is ibuprofen based instead of tylenol then use tylenol (does that make sense?) I hope this helps some. Hugs, Kimberlee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2011 Report Share Posted May 1, 2011 Great comments, Kimberlee. I also, rotate back and forth on Advil and Tylenol. I am on MTX and Prednisone (well a form of it) and trying to get off of it. In regards to MTX, I usually take 6 a week now. When I flare 8. Just like Kimberlee (outside of pain) my biggest issue related to Stills, happens to be a daily battle with fevers. I have been dx'd with a few other things, which makes things a bit more difficult to determine what is causing each symptom (unfortunately). MTX does reduce your ability to fight off bugs - so your Son should stay away from people if He knows they have a cold or flu (etc). He will catch things much easier. Take care all, Alli Quote Link to comment Share on other sites More sharing options...
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