Guest guest Posted June 1, 2009 Report Share Posted June 1, 2009 Welcome OKD, What is your diagnosis from the rheumy and endocrinologist? You have been through a lot, and I know your just wanting some peace. The RA meds are very scary, and we've all been where you are. I hope your doctor can figure out what's going on, and get you feeling better. Take care, Tawny --- In , " cofade_2000 " <Cofade_2000@...> wrote: > > Hello everyone: > > I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I had a hystrectomy about 2 years ago, so about 3 months ago, when I began to have what I can only describe as searing, burning bone pain in the long bones of both my legs, I told my primary care doc, she immediately sent me to my endocrinologist who then upped my synthroid, to no avail. The searing paid then traveled down to my knees and then I could no longer sleep, from the throbbin pain, then I was so dead tired, I almost couldnt function, I took off a week from work and sleep for 4 days straight, then my hands becme stiff anbd hurt, the bones on the top of one foot were hurting, i felt like my foot was going to break, I was miserable and became secrelty very scared (without telling my family), so I went back to my doctor, she then called a rhemuatologist who suggested cartain blood tests since autoimmune diseases can causes various ailments, sure enuf, my rheumatoid factor was sky high and I also had a serious Vit D deficiency. Fst forward to today, after I see the rhemuatologist. She started me on 5 mgs a day of prednisone, and I feel so much better, she added 50,00 unit of vit d and I started 2,000 a dy of fish oil and calcium. I added dark berries every day to my diet (cherries, blueberries, blackberry). I am afraid of prednisone, because my kids are asthmatics and I know its not something to stya on for long. It has been 3 weeks, and I get breakthru in my back and hands, but I feel like a million times better. This week I am starting methotrexate (after some liver testing) and I am afraid of the side effects I hear about, but the sering pain without the drug is so bad< i cant deal with the pain. I saw pain management specialist. She gave me Flexoril and Mobic, but it didnt do anything, stopped even making me sleepy after awhile at night (so at least it put me to sleep for a few days) > > I would appreciate any tips or comments. > > Thanks sincerely > > OKD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2009 Report Share Posted June 2, 2009 Hi OKD: Welcome to our group of wonderful caring people. I was sorry to read how much pain you are in and what you are going through. RA is hard to live with, but when you find the right " cocktail " of meds., you will feel so much better. I have had RA for 5 years, and it came on very suddenly. I went from a totally functioning woman in 5 days, to someone swollen with pain everywhere, could not get out of bed without help, couldn;t dress myself or feed myself. I thought I had a brain tumor. Saw my PCP, who sent me to a Rheumy the next day. She confirmed I had RA, and started me on MTX right away. I really didn't care what she gave me as long as I could get out of all that pain and suffering. I had never heard of RA before. She also gave me 2 shots of Pred., and an RX to take it everyday. I now inject myself with MTX once a week, take 10 mg. of Pred. daily for 6 years now, Sulfasalazine, and Placquenil. These have worked wonderfully for me. My RA is under control, I have blood work each month, and my Rheumy monitors me carefully. My flares are shorter in duration, and longer in between. I am pretty much pain free. I am grateful for what I can do, and I don't dwell on what I used to be able to do. I just take one day at a time. I set goals for myself each day as to what I want to get done. If I can do some of them, I am happy. My days of being a worldbeater are over. I don't appoligize to anyone anymore if I can't go with them. I felt guilty before if I said no, and that made things harder on me. My family and friends have been wonderful to me and so supportive. It did take awhile for them to really underestand the daily battle I had. I am 69 years old, and doing the best I can to have a nice life. My feet and ankles, hands and wrists were the worst with RA. When I have a bad flare, I just stay in bed. It is impossible for me to walk when my feet and ankles are so bad. I just try to make the best of it. I know you will feel so much better when you have a great Rheumy, and your meds. begin to work. It does take time though. I have resigned the fact that I will be on Pred. for the rest of my life. Have tried many times to get off it, but all the symptons come back, and I can't endure all that pain and suffering. I did put on 30 lbs., but I just try to get past that. I had to chose between vanity and no pain. I chose no pain. Wishing you pain free days ahead. Hugs, Barbara --- In , " cofade_2000 " <Cofade_2000@...> wrote: > > Hello everyone: > > I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I had a hystrectomy about 2 years ago, so about 3 months ago, when I began to have what I can only describe as searing, burning bone pain in the long bones of both my legs, I told my primary care doc, she immediately sent me to my endocrinologist who then upped my synthroid, to no avail. The searing paid then traveled down to my knees and then I could no longer sleep, from the throbbin pain, then I was so dead tired, I almost couldnt function, I took off a week from work and sleep for 4 days straight, then my hands becme stiff anbd hurt, the bones on the top of one foot were hurting, i felt like my foot was going to break, I was miserable and became secrelty very scared (without telling my family), so I went back to my doctor, she then called a rhemuatologist who suggested cartain blood tests since autoimmune diseases can causes various ailments, sure enuf, my rheumatoid factor was sky high and I also had a serious Vit D deficiency. Fst forward to today, after I see the rhemuatologist. She started me on 5 mgs a day of prednisone, and I feel so much better, she added 50,00 unit of vit d and I started 2,000 a dy of fish oil and calcium. I added dark berries every day to my diet (cherries, blueberries, blackberry). I am afraid of prednisone, because my kids are asthmatics and I know its not something to stya on for long. It has been 3 weeks, and I get breakthru in my back and hands, but I feel like a million times better. This week I am starting methotrexate (after some liver testing) and I am afraid of the side effects I hear about, but the sering pain without the drug is so bad< i cant deal with the pain. I saw pain management specialist. She gave me Flexoril and Mobic, but it didnt do anything, stopped even making me sleepy after awhile at night (so at least it put me to sleep for a few days) > > I would appreciate any tips or comments. > > Thanks sincerely > > OKD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Wrlcome I'm not, just had a roadrunner crash, so I haven't been on-line for ages. Have to get used yo working with this laptop. BB > > > On Jun 1, 2009, at 7:56 PM, cofade_2000 wrote: > > > Hello everyone: > > > > I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I > > had a hystrectomy about 2 years ago, so about 3 months ago, when I > > began to have what I can only describe as searing, burning bone pain > > in the long bones of both my legs, I told my primary care doc, she > > immediately sent me to my endocrinologist who then upped my > > synthroid, to no avail. The searing paid then traveled down to my > > knees and then I could no longer sleep, from the throbbin pain, then > > I was so dead tired, I almost couldnt function, I took off a week > > from work and sleep for 4 days straight, then my hands becme stiff > > anbd hurt, the bones on the top of one foot were hurting, i felt > > like my foot was going to break, I was miserable and became secrelty > > very scared (without telling my family), so I went back to my > > doctor, she then called a rhemuatologist who suggested cartain blood > > tests since autoimmune diseases can causes various ailments, sure > > enuf, my rheumatoid factor was sky high and I also had a serious Vit > > D deficiency. Fst forward to today, after I see the > > rhemuatologist. She started me on 5 mgs a day of prednisone, and I > > feel so much better, she added 50,00 unit of vit d and I started > > 2,000 a dy of fish oil and calcium. I added dark berries every day > > to my diet (cherries, blueberries, blackberry). I am afraid of > > prednisone, because my kids are asthmatics and I know its not > > something to stya on for long. It has been 3 weeks, and I get > > breakthru in my back and hands, but I feel like a million times > > better. This week I am starting methotrexate (after some liver > > testing) and I am afraid of the side effects I hear about, but the > > sering pain without the drug is so bad< i cant deal with the pain. > > I saw pain management specialist. She gave me Flexoril and Mobic, > > but it didnt do anything, stopped even making me sleepy after awhile > > at night (so at least it put me to sleep for a few days) > > > > I would appreciate any tips or comments. > > > > Thanks sincerely > > > > OKD > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Hi RA Guy: I was so sorry to read that you are only 36 and have been diagnosed with RA. There are guys here, so I am sure you will hear from them. I hope you have a good Rheumy who will treat your RA aggressively. I sure hope you will be pain free soon. You have come to the right place here. They have made the world of difference for me dealing with RA. When I got diag. 6 years ago, I had never heard of it before. My RA is under control, and I am pain free. My flares are shorter in duration, and longer in between. I am grateful for that. Again, welcome to our group. Hugs, Barbara --- In , " rheumatoidarthritisguy " <raguy@...> wrote: > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've only just recently entered the world of online support groups, and I really appreciate being able to talk with other people who are living with RA. > > I am a 36 y.o. male living with severe RA (any other guys with RA out there?) for almost five years, although I've had symptoms for about 10 years. This past month was one of my worst ever, but little by little things are looking up again. > > Thanks, > Rheumatoid Arthritis Guy > www.rheumatoidarthritisguy.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 What? " Adventures of a superhero on his journey through chronic pain and debilitating inflammation? " Do you think Rheumatoid Arthritis is funny? Do you think RA is kind of cosmic joke! OMG, finally someone I can relate to!!! Stan Seattle, Sun! Subject: [ ] New Member Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've only just recently entered the world of online support groups, and I really appreciate being able to talk with other people who are living with RA. I am a 36 y.o. male living with severe RA (any other guys with RA out there?) for almost five years, although I've had symptoms for about 10 years. This past month was one of my worst ever, but little by little things are looking up again. Thanks, Rheumatoid Arthritis Guy www.rheumatoidarthritisguy.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've only just recently entered the world of online support groups, and I really appreciate being able to talk with other people who are living with RA. > > I am a 36 y.o. male living with severe RA (any other guys with RA out there?) for almost five years, although I've had symptoms for about 10 years. This past month was one of my worst ever, but little by little things are looking up again. >35 > Thanks, > Rheumatoid Arthritis Guy > www.rheumatoidarthritisguy.com > hey RA guy and welcome! I am 35, close to your age. I was just recently diagnosed with RA. Do you have a blog under this same name? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Is the 'poster' really Stan or is it maybe wreaking havoc on our population? Maybe it's only a virus... And yes, there are those of us that are men of sorts. I was put down at age 46, 10 years older than you, and that was almost 20 years ago. The rules are better for you today. When I was struck with it, there wasn't much info or ADA protections, or even help. Now it's getting better. Dennis in eastexas On Thu, Jun 4, 2009 at 8:19 PM, <stanpfister@...> wrote: > > > > > What? " Adventures of a superhero on his journey through chronic pain and > debilitating inflammation? " Do you think Rheumatoid Arthritis is funny? Do > you think RA is kind of cosmic joke! OMG, finally someone I can relate to!!! > > > Stan > > Seattle, Sun! > > Subject: [ ] New Member > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've > only just recently entered the world of online support groups, and I really > appreciate being able to talk with other people who are living with RA. > > I am a 36 y.o. male living with severe RA (any other guys with RA out > there?) for almost five years, although I've had symptoms for about 10 > years. This past month was one of my worst ever, but little by little things > are looking up again. > > Thanks, > Rheumatoid Arthritis Guy > www.rheumatoidarthritisguy.com > > [ > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Welcome RA guy, You will find great support and information here. There are guys here too, so hope you stay awhile. Living with RA can be lonely, but finding people who understand, can make it so much easier. Take care, Tawny --- In , " rheumatoidarthritisguy " <raguy@...> wrote: > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've only just recently entered the world of online support groups, and I really appreciate being able to talk with other people who are living with RA. > > I am a 36 y.o. male living with severe RA (any other guys with RA out there?) for almost five years, although I've had symptoms for about 10 years. This past month was one of my worst ever, but little by little things are looking up again. > > Thanks, > Rheumatoid Arthritis Guy > www.rheumatoidarthritisguy.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 I'll second that... Third that and forth that.... The people here on this list are all life savors in their own right... Bonnie > > > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, > I've only just recently entered the world of online support groups, and > I really appreciate being able to talk with other people who are living > with RA. > > > > I am a 36 y.o. male living with severe RA (any other guys with RA out > there?) for almost five years, although I've had symptoms for about 10 > years. This past month was one of my worst ever, but little by little > things are looking up again. > > > > Thanks, > > Rheumatoid Arthritis Guy > > www.rheumatoidarthritisguy.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Hi RA Guy Welcome to the group. I think you will find that everyone here is more than willing to help. Some days I just need to vent and I come here. everyone listens ( or reads) and offers advice, I have learned so much here and the group has also given me great ideas to ask my MD about. Again welcome and glad you are here. Heidibug On Thu, Jun 4, 2009 at 1:34 PM, rheumatoidarthritisguy < raguy@...> wrote: > > > Hi all, I'm new to this Rheumatoid Arthritis Support Group. Actually, I've > only just recently entered the world of online support groups, and I really > appreciate being able to talk with other people who are living with RA. > > I am a 36 y.o. male living with severe RA (any other guys with RA out > there?) for almost five years, although I've had symptoms for about 10 > years. This past month was one of my worst ever, but little by little things > are looking up again. > > Thanks, > Rheumatoid Arthritis Guy > www.rheumatoidarthritisguy.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Good to hear from you, I've noticed you haven't been on a lot lately and I know you were dealing with things (like chunks out of your arm and such). says we're doing just fine on our own in the wreaking havoc department. . The two things I've learned to appreciate in having RA for me is having a little later in life (I'm 56) and being pretty healthy before that. It really upsets me to read these posts when young people are diagnosed with RA. I know we have to play the hand we are dealt but I think it harsh. The other is having RA now because these is so much available in terms of treatment and support. Before getting involved in this group I did a lot of research and talked with a lot of people in the health care biz. Before MTX there wasn't really anything going on except maybe a bottle of whiskey and a piece of leather, " here, bit on this when things get really bad! " My girlfriend's family had a friend years ago who had hands that look like giant sunflowers from the effects of RA. Off course, they had to tell me " all " about it the day after I was diagnosed. Stan, Seattle, Thunder Storms - we're paying for all that sun now. Subject: Re: [ ] New Member Is the 'poster' really Stan or is it maybe wreaking havoc on our population? Maybe it's only a virus... And yes, there are those of us that are men of sorts. I was put down at age 46, 10 years older than you, and that was almost 20 years ago. The rules are better for you today. When I was struck with it, there wasn't much info or ADA protections, or even help. Now it's getting better. Dennis in eastexas On Thu, Jun 4, 2009 at 8:19 PM, <stanpfister@...> wrote: > > > > > What? " Adventures of a superhero on his journey through chronic pain and > debilitating inflammation? " Do you think Rheumatoid Arthritis is funny? Do > you think RA is kind of cosmic joke! OMG, finally someone I can relate to!!! > > > Stan > Seattle, Sun! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 Welcome , I am very sorry for your pain right now. We are here to help you through the hard times, and laugh through the good. Do you have a rheumatologist? Its very important to get the best care possible with this horrible disease. It does take awhile, to find the right meds. Your doctor should try to help you through your pain. You need to sit down, and talk with him, or her about your needs. This disease is very painful, and you need to get a hold of it, and treat it aggressively. You have come to the right place for support, and the information you need. I was diagnosed with RA in 01, and I was devastated. Thanks to this group, I picked myself up,(very slowly), and it took awhile for me to understand what I need to do. I have been in severe pain since then, but lately, I've been feeling better. I also have fibro, and a lot of my pain was from this disease. After all these years, its taken this long, for me to get use to living with RA. Its not easy, but dealing with it makes it easier, if that makes sense? I have a 14yr old daughter, and it is hard to not be able to do the stuff I use to. Just don't get down on yourself, its not your fault , its not that you don't want too. There are still things you can do, to make your child happy. Just talk with him, and he will understand. He loves you unconditionally, and you are his Mom:) If you need to talk, you can email me anytime. You can get through this, with the help of others who know what you go through. Take care, Tawny --- In , " shelly_avery " <shelly_avery@...> wrote: > > I just wanted to take a minute and introduce myself. My name is and I'm 40 yrs old. I'm married and we have a 9yr old son with hemophilia. I have been dealing with severe pain for 3 yrs and just 3 months ago recieved the diagnoses of RA. I have started 2 different kinds of meds but had to quit taking one of them because of side affects. The reason why I joined this group at this time of the morning is because I have been up all night in pain. I was sitting here trying everything I could think of to try to lesson the pain and it's just one of those nights that the pain won't let up so I decided that it was time to go online and try to find some support. I feel so alone in this journey that it would be nice to talk to people that understand what I'm going through. One thing that bothers me is that I can't do what I used to be able to do. Every day things along with doing things with my son. I so hope that this gets better. Well I have cried enough for tonight. I look forward to getting to know everyone. Thank you for listening > > > Mom to the blessing from above > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Thanks very much for allowing me to join your group. I appologize for this long post but I am hoping someone can offer some advice. I am having trouble finding meds that will work for me. I had a bad allergic reaction to plaquinil after my first rheumy diagnosed lupus. I found another dr. who diagnosed RA and put me on sulfasalazine and meloxicam. After 6 weeks, I developed a huge swollen gland under my chin, the size of a golf ball. When I called my rheumy they said to call my GP because it was not related. My GP switched antibiotics twice with still no effect on the gland but blood tests showed liver abnormality. The rheumy still said it was unrelated to the medication. I stopped taking the meds anyway and 48 hrs later the gland began to receed. I see my rheumy tomorrow for a regular check up and I have now been off meds for 4 days so I'm back to square one. I am feeling very frustrated at this point and scared that I will never be able to return to the life I knew before I was diagnosed a year ago. I am looking for success stories, can people be helped with medication and return to a normal life? Is it usually this hard to find the right meds? Thanks for any input, Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Hi Gang Thanks for all the great input. I'll always found that the best way to find out about anything was to go straight to the people that have experienced it The methotrexate has probably brought me back to about 70% of my former capabilities. It seems to have stabilized and doesn't appear to getting worse although I do have flare ups. I'm sorry to hear about tomatoes, they are fully involved in all my favorite dishes. Although I will attempt to avoid the other suspicious food on the list I'm afraid I'll have to maintain my relationship with the tomato. The Humira question is still up in the air. I'm still weighing the risks versus the rewards. Best of all in the group, Wild Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 hi Bill, a big welcome to the group..... lot's of good people here to help you with all your questions, all your worries ..... i have lots of them ...lol... my name is Betty, i live in south Alabama. we probably have all the same kind of good weather ...lol... all the heat and humidity that stirs up this old arthritis. its late so i'll say good nite, try to get some sleep. i get three or maybe four sleep a night.there's lots of people like us who don't sleep much, guess its just another arthritis thing..lol.. see ya later, Betty On 3/25/11, Bill Schroeder <bschroeder9@...> wrote: > Hi Gang > > Thanks for all the great input. I'll always found that the best way to find > out about anything was to go straight to the people that have experienced it > > > The methotrexate has probably brought me back to about 70% of my former > capabilities. It seems to have stabilized and doesn't appear to getting > worse although I do have flare ups. > > I'm sorry to hear about tomatoes, they are fully involved in all my favorite > dishes. Although I will attempt to avoid the other suspicious food on the > list I'm afraid I'll have to maintain my relationship with the tomato. > > The Humira question is still up in the air. I'm still weighing the risks > versus the rewards. > > Best of all in the group, > > Wild Bill > > > -- NUMBERS 6: 24-26 Quote Link to comment Share on other sites More sharing options...
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