Not convinced its RA
fairycop posted:
My doc has put me on RA meds, methotrexate 2.5 mg, 6 pills once a week. I hurt all the time, and sure its hard to get going in the morning. Any time there is a storm or its cold its really bad. After I work ar am active I'm done for a while, I hurt everywhere. I was put one fibro meds and depressants over a year ago and still nothing, I even take anti seizure meds for major migraines that I get everyday if I don't. My blood work came back normal, as did my xrays, with the exception of a few bone spurs. I hurt mostly in my fingers and feet, knees, I do have osteopenia due to have a stupid experimental chemo injections for 18 months, I've been screwed up ever since. I'm only 35. I used to be a cop, now I'm a cashier at a local grocery store, which leaves me in so much pain by the time I get home. I never feel good. I don't know what to do, my family just acts as if I imagine everything, or that I'm just depressed, and I know that that's not it. I really do feel the pain, every day, and yes there is flare ups, where it is worse. I'm just not sure that its RA, there's no swelling, although the fingers do get warm when they hurt, it just seems like its getting worse so fast. With all the meds, its like I can't think. I don't know how to talk to my family anymore, my rheumatologist goes in and out of the office so fast you don't even get a word in, but I'm stuck with her, because I'm in this small town. I cant talk to her at all. I need help.
6 Replies |Watch This Discussion | Report This| Share this:Not convinced its RAMy doc has put me on RA meds, methotrexate 2.5 mg, 6 pills once a week. I hurt all the time, and sure its hard to get going in the morning. Any time there is a storm or its cold its really bad. After I work ar am active I'm done for a while, I hurt everywhere. I was put one fibro meds and depressants over a year ago and still nothing, I even take anti seizure meds for major migraines that I get everyday if I don't. My blood work came back normal, as did my xrays, with the exception of a few bone spurs. I hurt mostly in my fingers and feet, knees, I do have osteopenia due to have a stupid experimental chemo injections for 18 months, I've been screwed up ever since. I'm only 35. I used to be a cop, now I'm a cashier at a local grocery store, which leaves me in so much pain by the time I get home. I never feel good. I don't know what to do, my family just acts as if I imagine everything, or that I'm just depressed, and I know that that's not it. I really do feel the pain, every day, and yes there is flare ups, where it is worse. I'm just not sure that its RA, there's no swelling, although the fingers do get warm when they hurt, it just seems like its getting worse so fast. With all the meds, its like I can't think. I don't know how to talk to my family anymore, my rheumatologist goes in and out of the office so fast you don't even get a word in, but I'm stuck with her, because I'm in this small town. I cant talk to her at all. I need help.
Byroney_WebMD_Staff responded:
Dear fairycop,
I'm so sorry to hear of your situation. It sounds like you really need to have your doctor listen to you. How about making an appointment specifically to talk to your rheumatologist? Write down a list of your questions and bring it with you so you won't forget anything.
You may also have to consider driving a distance to a different rheumatologist to get a second opinion. One of our other members here had to drive 120 miles to see a dentist who would give the proper care for someone with RA. In the long run, you may find a rheumatologist who listens to you and addresses your concerns is worth more in time and money than someone closer.
I also have an article on Pain Clinics , which is something you may want to consider talking with your doctor about, too.
In support,
Byroney
I'm so sorry to hear of your situation. It sounds like you really need to have your doctor listen to you. How about making an appointment specifically to talk to your rheumatologist? Write down a list of your questions and bring it with you so you won't forget anything.
You may also have to consider driving a distance to a different rheumatologist to get a second opinion. One of our other members here had to drive 120 miles to see a dentist who would give the proper care for someone with RA. In the long run, you may find a rheumatologist who listens to you and addresses your concerns is worth more in time and money than someone closer.
I also have an article on Pain Clinics , which is something you may want to consider talking with your doctor about, too.
In support,
Byroney
Report This| Share this:Not convinced its RADear fairycop,<br /> <br />I'm so sorry to hear of your situation. It sounds like you really need to have your doctor listen to you. How about making an appointment specifically to talk to your rheumatologist? Write down a list of your questions and bring it with you so you won't forget anything.<br /> <br />You may also have to consider driving a distance to a different rheumatologist to get a second opinion. One of our other members here had to drive 120 miles to see a dentist who would give the proper care for someone with RA. In the long run, you may find a rheumatologist who listens to you and addresses your concerns is worth more in time and money than someone closer.<br /> <br />I also have an article on <a href="http://www.webmd.com/pain-management/pain-clinics-overview">Pain Clinics</a> , which is something you may want to consider talking with your doctor about, too.<br /> <br />In support,<br /> <br />Byroney
RAWarrior responded:
Hi fairycop.
I agree with Byroney you should get a second opinion if you are unconvinced. RA dx are not easy to get & most docs seem hesitant to dx, so your doc must be fairly certain if you are on mtx. But still, you need to know for sure for yourself so you can fight whatever it is w/ all your heart.
I'm sorry about the unbelieving family. That is common with RA. The lack of swelling is also common. Here is something to read about that - click here . Be sure to look at the comments. Hearing others descriptions of that may help.
A lot of your story sounds like typical RA, but we can't know like a good doc can. I hope you can find a good 2nd opinion that you trust. Good luck.
Kelly
RA Warrior.com
I agree with Byroney you should get a second opinion if you are unconvinced. RA dx are not easy to get & most docs seem hesitant to dx, so your doc must be fairly certain if you are on mtx. But still, you need to know for sure for yourself so you can fight whatever it is w/ all your heart.
I'm sorry about the unbelieving family. That is common with RA. The lack of swelling is also common. Here is something to read about that - click here . Be sure to look at the comments. Hearing others descriptions of that may help.
A lot of your story sounds like typical RA, but we can't know like a good doc can. I hope you can find a good 2nd opinion that you trust. Good luck.
Kelly
RA Warrior.com
Report This| Share this:Not convinced its RAHi fairycop. <br />I agree with Byroney you should get a second opinion if you are unconvinced. RA dx are not easy to get & most docs seem hesitant to dx, so your doc must be fairly certain if you are on mtx. But still, you need to know for sure for yourself so you can fight whatever it is w/ all your heart.<br /> <br />I'm sorry about the unbelieving family. That is common with RA. The lack of swelling is also common. Here is something to read about that - <a rel="nofollow" href="http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/">click here</a> . Be sure to look at the comments. Hearing others descriptions of that may help.<br /> <br />A lot of your story sounds like typical RA, but we can't know like a good doc can. I hope you can find a good 2nd opinion that you trust. Good luck. <br /> <br /><a rel="nofollow" href="http://rawarrior.com">Kelly <img src="http://img.webmd.com/community/images/grin.gif" align="top" border="0"></a> <br /><a rel="nofollow" href="http://rawarrior.com">RA Warrior.com</a>
joe1225326; responded:
Not sure what test you have done but the Anti-ccp, syphilis test (for real they doc has something special on this one), and the Rheum Factor are the test that I have ran across for RA and some genetic marker test. I had swelling and after a year i am still negative for everything and I am on methotrexate, been to mayo clinic and many docs and the thing that did me the best justice was my own homework and I know you are tired after work, but look at the antibiotic protocol in dealing with this situation, i was basically bed ridden for two months before i started minocycline and the morning stiffness was gone in 4 days, this was not a preferred method of my rheum for sure and he was in "disbelief" when it worked. Most of the research is not on the cause of these type of problems and but on how to shut off the immune system. Methotrexate does not anything, it just gives the immune system something to "chew on." good luck hope some of this helps
Report This| Share this:Not convinced its RANot sure what test you have done but the Anti-ccp, syphilis test (for real they doc has something special on this one), and the Rheum Factor are the test that I have ran across for RA and some genetic marker test. I had swelling and after a year i am still negative for everything and I am on methotrexate, been to mayo clinic and many docs and the thing that did me the best justice was my own homework and I know you are tired after work, but look at the antibiotic protocol in dealing with this situation, i was basically bed ridden for two months before i started minocycline and the morning stiffness was gone in 4 days, this was not a preferred method of my rheum for sure and he was in "disbelief" when it worked. Most of the research is not on the cause of these type of problems and but on how to shut off the immune system. Methotrexate does not anything, it just gives the immune system something to "chew on." good luck hope some of this helps
ffrescaa responded:
Fairycop and anyone. I was diagnosed with RA about 4 years ago. Went thru 3 years of HELL....methotrexate, enbrel, humira, remicade, plaquenil, prednisone, orencia, gold (and maybe a few others I've forgotten). I ended up with liver damage, kidney damage, diabetes, a bout of severe pain and convulsions, and the gold literally killed me (no pulse, respiration, or blood pressure). One of my kids (I am now 69 yrs old) found "The Road Back Foundation" online and the work of Dr. Thomas McPherson Brown. In Sept of 2009 I began taking minocycline, had some pretty severe Herxheimer pain in Feb and Mar 2010 but achieved remission in late April of 2010. YES, I AM IN REMISSION.....and I can't tell you how good it feels.....I can turn door knobs....I can open pop cans.....I can play with my grandkids....I actually wake up and WANT to do sit ups and push ups! PLEASE google the above sites and seriously consider this option....P S minocycline is prescribed to teenagers for acne....and has very few side effects. Frank L Feczko 614-795-3670
Report This| Share this:Not convinced its RAFairycop and anyone. I was diagnosed with RA about 4 years ago. Went thru 3 years of HELL....methotrexate, enbrel, humira, remicade, plaquenil, prednisone, orencia, gold (and maybe a few others I've forgotten). I ended up with liver damage, kidney damage, diabetes, a bout of severe pain and convulsions, and the gold literally killed me (no pulse, respiration, or blood pressure). One of my kids (I am now 69 yrs old) found "The Road Back Foundation" online and the work of Dr. Thomas McPherson Brown. In Sept of 2009 I began taking minocycline, had some pretty severe Herxheimer pain in Feb and Mar 2010 but achieved remission in late April of 2010. YES, I AM IN REMISSION.....and I can't tell you how good it feels.....I can turn door knobs....I can open pop cans.....I can play with my grandkids....I actually wake up and WANT to do sit ups and push ups! PLEASE google the above sites and seriously consider this option....P S minocycline is prescribed to teenagers for acne....and has very few side effects. Frank L Feczko 614-795-3670
aecort responded:
Dear Fairycop,
It's easy to understand why you are depressed. 16 years ago I was diagnosed with RA, after pretty much deciding that was my problem. I did a lot of research and came up with The Arthritis Breakthrough by Thomas Brown and later Henry Scammell. Dr. Brown spent his entire lifetime treating RA patients and patients with similar diseases with antiobiotic therapy. Sadly he has passed away or he would still be curing patients. I found a sympathetic Dr. who agreed to put me on Minocycline and after about 2 mos. began to feel better - a day here and there and then most of the time. This worked for 13 years for me and it's only recently that it has not been so effective. However, I am reluctant to try some of the newer drugs because of the terrible side effects. Please get a copy of Dr. Brown's book (Scammell wrote the later version) and judge for yourself if it's worth pursuing. Then find a sympathetic Dr. who will prescribe minocin (minocycline) for you. Most people can tolerate if for long periods of time with no adverse side effects. Good luck - keep at it!
It's easy to understand why you are depressed. 16 years ago I was diagnosed with RA, after pretty much deciding that was my problem. I did a lot of research and came up with The Arthritis Breakthrough by Thomas Brown and later Henry Scammell. Dr. Brown spent his entire lifetime treating RA patients and patients with similar diseases with antiobiotic therapy. Sadly he has passed away or he would still be curing patients. I found a sympathetic Dr. who agreed to put me on Minocycline and after about 2 mos. began to feel better - a day here and there and then most of the time. This worked for 13 years for me and it's only recently that it has not been so effective. However, I am reluctant to try some of the newer drugs because of the terrible side effects. Please get a copy of Dr. Brown's book (Scammell wrote the later version) and judge for yourself if it's worth pursuing. Then find a sympathetic Dr. who will prescribe minocin (minocycline) for you. Most people can tolerate if for long periods of time with no adverse side effects. Good luck - keep at it!
Report This| Share this:Not convinced its RADear Fairycop,<br /> It's easy to understand why you are depressed. 16 years ago I was diagnosed with RA, after pretty much deciding that was my problem. I did a lot of research and came up with The Arthritis Breakthrough by Thomas Brown and later Henry Scammell. Dr. Brown spent his entire lifetime treating RA patients and patients with similar diseases with antiobiotic therapy. Sadly he has passed away or he would still be curing patients. I found a sympathetic Dr. who agreed to put me on Minocycline and after about 2 mos. began to feel better - a day here and there and then most of the time. This worked for 13 years for me and it's only recently that it has not been so effective. However, I am reluctant to try some of the newer drugs because of the terrible side effects. Please get a copy of Dr. Brown's book (Scammell wrote the later version) and judge for yourself if it's worth pursuing. Then find a sympathetic Dr. who will prescribe minocin (minocycline) for you. Most people can tolerate if for long periods of time with no adverse side effects. Good luck - keep at it!
Lizzyb40 responded:
Have you also looked at your diet? A lot of RA is actually gluten intolerance. I was diagnosed with RA almost a year ago. When I started reading up on gluten intolerance, I was shocked - it was like reading my health history. I've been gluten free for 6 weeks and can tell a huge difference. My brain haze is gone and I dropped 10 pounds and 6 sizes - yes 6 with just 10 points. I was that bloated! I am on methotrexate - for now. I am working very hard on diet and lifestyle changes - going natural with as much as possible. Check out astaxanthin - a very powerful antioxidant and MSM - a joint sulfer.
Report This| Share this:Not convinced its RAHave you also looked at your diet? A lot of RA is actually gluten intolerance. I was diagnosed with RA almost a year ago. When I started reading up on gluten intolerance, I was shocked - it was like reading my health history. I've been gluten free for 6 weeks and can tell a huge difference. My brain haze is gone and I dropped 10 pounds and 6 sizes - yes 6 with just 10 points. I was that bloated! I am on methotrexate - for now. I am working very hard on diet and lifestyle changes - going natural with as much as possible. Check out astaxanthin - a very powerful antioxidant and MSM - a joint sulfer.
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