Aa
HELP! My ANA is on the rise and is possibly contributing to other health problems!
I had a recent increase in my ANA titer that the doctors say may be an indicator that problem with my disorder(s) has caused or contributed to some recent heart problems. Any idea why an ANA would go from 1:80 to 1:640 in 3 months? What do I do about this... they already put me on prednisone but I definitely would like to know what other options I might have to help with this? I don't know much about the whole ANA thing but I am worried...
Thank you for the information that you posted, can you tell me where I can find more info? You can send me a message on here or see the info posted above about how to reach me via instant contact. Thank you again. it sounds like you have some great info!
Thank you for your post...
I too have suffered with the pain in both legs and have a difficult time even brushing my hair because of the pain in my arms. A couple of summers ago I would go walking everyday after work with a friend while our kids played on the playground at the track, now I am lucky like you say to make it through the grocery store. The doctors have done numerous tests, CT scans, MRI's nerver testing, etc... In addition to the already given list, they say I have degenerative disk disease in my low back and in my neck. They accounted for the arm pain, weakness, tingling and numbness by saying I have thoracic outlet syndrome. I have been sent to PT more times than I can count now and they will not do anything for me other than massage because they say I have too many "red-flags" that my dr.s aren't taking seriously. I am no stranger to chronic pain as I was diagnosed with Juvenille Rhuematoid arthritis when I was 10 after dr's at Children's Hospital in Seattle spent a year boggled by my symptoms- high fevers anywhere up to 107*, splotchy raised rash all over my body, joint pain, difficulty breathing, liver swelling... So I am no stranger to pain, but this has been incredibly different than anything I have ever experienced before. My symptoms started about 5 years ago, but were not that severe until the past 2 or 3 years that I couldn't just keep pushing through and buy the dr.'s explaination that it was just a flare up of the arthritis. Now, the specialist I seen seems to be leaning more towards lupus and says he wonders if it was ever truly JRA I had as a kid. Like you I am extremely frustrated with the professionals... I have had what feels like nearly ever test known to man with very little understanding of what is wrong or how to treat it. I am having to jump through hoops now for disability. You would think with both my PCP and the Rhuematologist signing forms saying that what I have is debilitating and will not get better or go away, it would be a no brainer but apparently not....
I have been on plaquenil for more than a year and have seen NO relief from it but they tell me to keep taking it anyway. I have been on the methotrexate for 2 months now and they are getting ready to increase the dose even though the only thing is seems to be doing is making me feel worse. Now I hardly get out of bed unless I absolutely have to, I am dealing with probably 85% of the "possible side effects" from it and will likely need to add promethezine to the list of regular meds because of the constant nausea from it... I dont even attempt to dress up anymore either. Spend most days in my PJ's or sweats and a t-shirt n slip ons. Doing things with the kids is nearly impossible and when I have to attend special events I feel like I just want to curl up in a ball and die for 2-3 days afterwards. I have to push myself to get through everyday. Its so frustrating. There is a fibromyalgia support group here, but like procrastinators anonymous the group always seems to be put off to another day due to lack of support and attendance. I am on cymbalta... forgot to put that on the list sorry.. It does help alot with the nerve pain in my back and legs so if you get a chance, ask your PCP for some free samples to see what you think. It takes a couple weeks to get the full effect. You might be nauseaous at first but it is worth it if you can stick it out.
I would do the water thing at the pool here but both pools are fairly cool for me and I get now relief from it. I spend a lot of time in hot showers though. I can't really sit and soak in a hot bath though because it messes with my heart. I am looking at PlateletGal's suggestions about the Marshall Protocal and going to see if I can find more info on it because it is ridicoulous to feel like this at my age and for you at your age. Do you use any instant messaging programs? I use the 2 major ones under the identity alaskanhunny if you ever want to chat real time and have someone who can understand your predicament.
Keep your chin up and I will be sure to say a prayer for you!
I too have suffered with the pain in both legs and have a difficult time even brushing my hair because of the pain in my arms. A couple of summers ago I would go walking everyday after work with a friend while our kids played on the playground at the track, now I am lucky like you say to make it through the grocery store. The doctors have done numerous tests, CT scans, MRI's nerver testing, etc... In addition to the already given list, they say I have degenerative disk disease in my low back and in my neck. They accounted for the arm pain, weakness, tingling and numbness by saying I have thoracic outlet syndrome. I have been sent to PT more times than I can count now and they will not do anything for me other than massage because they say I have too many "red-flags" that my dr.s aren't taking seriously. I am no stranger to chronic pain as I was diagnosed with Juvenille Rhuematoid arthritis when I was 10 after dr's at Children's Hospital in Seattle spent a year boggled by my symptoms- high fevers anywhere up to 107*, splotchy raised rash all over my body, joint pain, difficulty breathing, liver swelling... So I am no stranger to pain, but this has been incredibly different than anything I have ever experienced before. My symptoms started about 5 years ago, but were not that severe until the past 2 or 3 years that I couldn't just keep pushing through and buy the dr.'s explaination that it was just a flare up of the arthritis. Now, the specialist I seen seems to be leaning more towards lupus and says he wonders if it was ever truly JRA I had as a kid. Like you I am extremely frustrated with the professionals... I have had what feels like nearly ever test known to man with very little understanding of what is wrong or how to treat it. I am having to jump through hoops now for disability. You would think with both my PCP and the Rhuematologist signing forms saying that what I have is debilitating and will not get better or go away, it would be a no brainer but apparently not....
I have been on plaquenil for more than a year and have seen NO relief from it but they tell me to keep taking it anyway. I have been on the methotrexate for 2 months now and they are getting ready to increase the dose even though the only thing is seems to be doing is making me feel worse. Now I hardly get out of bed unless I absolutely have to, I am dealing with probably 85% of the "possible side effects" from it and will likely need to add promethezine to the list of regular meds because of the constant nausea from it... I dont even attempt to dress up anymore either. Spend most days in my PJ's or sweats and a t-shirt n slip ons. Doing things with the kids is nearly impossible and when I have to attend special events I feel like I just want to curl up in a ball and die for 2-3 days afterwards. I have to push myself to get through everyday. Its so frustrating. There is a fibromyalgia support group here, but like procrastinators anonymous the group always seems to be put off to another day due to lack of support and attendance. I am on cymbalta... forgot to put that on the list sorry.. It does help alot with the nerve pain in my back and legs so if you get a chance, ask your PCP for some free samples to see what you think. It takes a couple weeks to get the full effect. You might be nauseaous at first but it is worth it if you can stick it out.
I would do the water thing at the pool here but both pools are fairly cool for me and I get now relief from it. I spend a lot of time in hot showers though. I can't really sit and soak in a hot bath though because it messes with my heart. I am looking at PlateletGal's suggestions about the Marshall Protocal and going to see if I can find more info on it because it is ridicoulous to feel like this at my age and for you at your age. Do you use any instant messaging programs? I use the 2 major ones under the identity alaskanhunny if you ever want to chat real time and have someone who can understand your predicament.
Keep your chin up and I will be sure to say a prayer for you!
I'm sorry to hear about your health struggles. The research protocol (Marshall Protocol) I'm doing right now treats the bacteria that is responsible for inflammation and inflammatory conditions. What happens is, the bacteria multiplies and many people on this protocol believe that is why so many of us with Fibro, CFS, etc. have other health conditions. We just tell everyone that we have a "Th1 inflammatory disease". = ) There are people on their website who have sarcoidosis, chronic lyme disease, autoimmune diseases and many of us with fibro and/or CFS.
Also there is a physician who has been researching and involved in the clinical care of overlapping conditions. His name is Dr. Daniel Clauw and he is the Professor of Medicine in the Division of Rheumatology at the University of Michigan in Ann Arbor, Michigan. He sees many fibromyalgia and CFS patients --- many of who have other health conditions as well. You may want to check out his research online.
As the other poster said, keep researching and don't give up ! They are coming out with new research information every single day.
Let us know how you are doing if you can and what happens !
So sorry about your health, I am in about the same boat and it appears my auto immune is progressing just as fast as yours. Exhaustion is an understatement for people in our situation, I can really relate and I hate that I can, no offense.
I just turned 27 recently and my symptoms began exactly July 1st 2007 in the middle of the night when I was up late doing laundry. Up and down the stairs several times, nothing out of the usual but the first symptom was sudden onset of lower leg pain in both legs. I assumed I over exerted myself. I was sooooooo wrong! I will make this short as possible. On my post I forgot to add how many times I had to rush to an urgent because of the consistant chronic pain, it was and still is unbearable 90% of the time.
I am off work until further notice wich was effective in September, my doc said work is not option for someone who can hardly walk. I took med leave anyway in July to what I thought was healing from an injury only to realize, this problem is not getting better it is progressing. I will not be returning to work, I will be on disability.I don't drive because it is to painful plus I am afraid of the sudden onset of numbness in my legs I get-that would be bad while driving, especially having young children. So, I have not drove in over two months. I have not grocery shopped in about that long, I hate that because I like going grocery shopping with my kids. It takes me about one hour to do a sink full of dishes because of the pain that radiates up my arms when I use my fingers. Cold weather is definately my enemy, it causes swelling and increased pain in arms and legs. Totally understand the 70 or 80's age feeling. It is so depressing at times. Everything I do is based on my pain level, not what I want to do. I am a completetly different person. I am not vivrant, outgoing, or energetic at all. I use to dress up everyday whether I had to work or not, I have not dressed up or wore a pair of heels in months only tennis shoes. I got so angry in August I sold some of my favorite heels at our neighborhood garage sale. I figured whats the use.
I know there are people that are suffering way more than I am but this is just so quick and so aggressive. On top of ALL OF THE OTHER SYMPTOMS, the pain alone is enough to send me over the edge somedays. Sometimes when I am alone I just cry and cry. I am sure you have felt the same, especially when all the "PROS" are like "well, we don't know". My PCP is great he said "I wish there was a magic test I can give you to say this is exactly whats wrong, but I can't." I have so many significant symptoms of several auto immunes that I am all over the board. I went five days 95% pain free all in row and I was so excited, I thought this "flare" was done with. On monday night everything exploded five times the normal symptoms. I was devistated. I have to keep going
It is obvious nothing is working for me either, predinisone did at a high dose but the side effects are herendous. Anti-inflammitories tear my stomach to shreds. So, since there is no cure for this you can only treat the symptoms until you find what works. Pain medicine, anti-depressants, and physical therapy-SURE!!! Water erobics is nice, for me I do not feel hardly any pain under water, that mey help. Also, I don't know if you have tried Neurontin or Cymbalta, people have been saying good things about Cymbalta.
Don't give up and like I say, keep researching. They make new medical advances everyday! God Bless!
I just turned 27 recently and my symptoms began exactly July 1st 2007 in the middle of the night when I was up late doing laundry. Up and down the stairs several times, nothing out of the usual but the first symptom was sudden onset of lower leg pain in both legs. I assumed I over exerted myself. I was sooooooo wrong! I will make this short as possible. On my post I forgot to add how many times I had to rush to an urgent because of the consistant chronic pain, it was and still is unbearable 90% of the time.
I am off work until further notice wich was effective in September, my doc said work is not option for someone who can hardly walk. I took med leave anyway in July to what I thought was healing from an injury only to realize, this problem is not getting better it is progressing. I will not be returning to work, I will be on disability.I don't drive because it is to painful plus I am afraid of the sudden onset of numbness in my legs I get-that would be bad while driving, especially having young children. So, I have not drove in over two months. I have not grocery shopped in about that long, I hate that because I like going grocery shopping with my kids. It takes me about one hour to do a sink full of dishes because of the pain that radiates up my arms when I use my fingers. Cold weather is definately my enemy, it causes swelling and increased pain in arms and legs. Totally understand the 70 or 80's age feeling. It is so depressing at times. Everything I do is based on my pain level, not what I want to do. I am a completetly different person. I am not vivrant, outgoing, or energetic at all. I use to dress up everyday whether I had to work or not, I have not dressed up or wore a pair of heels in months only tennis shoes. I got so angry in August I sold some of my favorite heels at our neighborhood garage sale. I figured whats the use.
I know there are people that are suffering way more than I am but this is just so quick and so aggressive. On top of ALL OF THE OTHER SYMPTOMS, the pain alone is enough to send me over the edge somedays. Sometimes when I am alone I just cry and cry. I am sure you have felt the same, especially when all the "PROS" are like "well, we don't know". My PCP is great he said "I wish there was a magic test I can give you to say this is exactly whats wrong, but I can't." I have so many significant symptoms of several auto immunes that I am all over the board. I went five days 95% pain free all in row and I was so excited, I thought this "flare" was done with. On monday night everything exploded five times the normal symptoms. I was devistated. I have to keep going
It is obvious nothing is working for me either, predinisone did at a high dose but the side effects are herendous. Anti-inflammitories tear my stomach to shreds. So, since there is no cure for this you can only treat the symptoms until you find what works. Pain medicine, anti-depressants, and physical therapy-SURE!!! Water erobics is nice, for me I do not feel hardly any pain under water, that mey help. Also, I don't know if you have tried Neurontin or Cymbalta, people have been saying good things about Cymbalta.
Don't give up and like I say, keep researching. They make new medical advances everyday! God Bless!
OK I have been to see a rhuematologist several times now... My list of diagnosis keeps growing. On the menu today we have;
Mixed Collagen Vascular Disease, Fibromyalgia, Sjogren's Syndrome, Rhuemotoid AND Osteoarthritis along with degenerative disk disease, a heart condition of "indeterminable origin that may likely be related to the MCVD" (numerous PVC's, PAC's, atrial fibrillation (sp?) and now some mitral valve regurge).
ANA is still elevated, and they are not sure why or what to do. The Rhuematologist decided he wanted to run me on a course of methorexate to "knock [my] immune system in the dust in hopes that it will remember what it is SUPPOSED to be doing." I am now taking methotrexate, folic acid, plaquenil, prednisone, metoprolol, omeprozole, lorazepam and cyclobenzaprine. Nothing seems to be working and more and more systems are being affected. I am applying for disability because there is now way now that I can possibly keep a job when I can barely make it through the day doing basic things. I am in constant pain, worse than I was before, I am completely exaughsted and can barely function. I am in my early 30's and my quality of life is now that of someone well into their 70's or 80's!
I am open to any suggestions that anyone might have... I mentioned POTS to the rhuematologist, but he didn't seem to think that it was a concern. Please let me know if you have any ideas!!!
Mixed Collagen Vascular Disease, Fibromyalgia, Sjogren's Syndrome, Rhuemotoid AND Osteoarthritis along with degenerative disk disease, a heart condition of "indeterminable origin that may likely be related to the MCVD" (numerous PVC's, PAC's, atrial fibrillation (sp?) and now some mitral valve regurge).
ANA is still elevated, and they are not sure why or what to do. The Rhuematologist decided he wanted to run me on a course of methorexate to "knock [my] immune system in the dust in hopes that it will remember what it is SUPPOSED to be doing." I am now taking methotrexate, folic acid, plaquenil, prednisone, metoprolol, omeprozole, lorazepam and cyclobenzaprine. Nothing seems to be working and more and more systems are being affected. I am applying for disability because there is now way now that I can possibly keep a job when I can barely make it through the day doing basic things. I am in constant pain, worse than I was before, I am completely exaughsted and can barely function. I am in my early 30's and my quality of life is now that of someone well into their 70's or 80's!
I am open to any suggestions that anyone might have... I mentioned POTS to the rhuematologist, but he didn't seem to think that it was a concern. Please let me know if you have any ideas!!!
POTS is postural orthostatic tachycardia syndrome. The definition of POTS is an excessive heart rate increment upon standing. There are other symptoms that often accompany this syndrome.
Hi I have fluctuating ANA's too. On it's own I was told it does not tell doctor exactly what is the matter. by the way what is POTS?
What sort of heart problems do you have ? The reason why I ask is because POTS is common in patients' with CFS. 25% of patients' with CFS have positive ANA titers and some autoimmunity problems. My ANA titer is also 1:640.
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