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  • Rheumatoid Arthritis Need help getting taken seriously

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    Old 07-01-2019, 07:36 PM   #1
    Jcmadchats
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    Need help getting taken seriously

    Hi there, I am new to these forums. I just found out this week that I have arthritis in my foot after i started noticing my foot swelling up in the mornings and a great deal of pain. Aside from the pain in my foot, I have been feeling rather miserable for at least a year now, and I have found that I have some vitamin deficiencies. I thought taking supplements would make me feel much better, but so far I'm not feeling better and my levels have come up a little so I would at least expect some change.

    My doctors havent been looking into the root cause of the deficiencies and it has been my experience that doctors can sometimes have a hard time focusing on more than one symptom at a time, so I feel like I've got all of these things going on but my doctors arent looking at any of them as if they are related.

    I have suspected that I have some kind of autoimmune disease for a while, but I'm not sure which one and my doctors dont seem very concerned despite the fact that I am telling them I'm miserable. The symptoms I have that make me think I might have RA are: random aches and pains in most joints including ankles, knees, elbows, fingers, hips, and a stiff neck and shoulders; swelling and heat in some joints like fingers on my left hand, and my left foot; night sweats and trouble sleeping; hot flashes and sometimes low grade fevers in the mornings; extreme fatigue.

    I am 32 years old and have been dealing with chronic pain since I was 20, and I've never had anyone actually see arthritis in any xrays until this past week. My pain symptoms are better with regular exercise, but still present. I feel the absolute worst in the winter, when my neck and shoulders are painfully stiff to the point of having barely any range of motion. I am just at my wits end at this point, as the foot diagnosis this week came with a referral to see a podiatrist who won't be able to see me until the end of August, and the new doctor seems a lot like every other doctor I have been to who focuses on the one thing that is bothering me the most at that time and forgets about all the rest of the stuff. I'm going to give my new doctor a call tomorrow to reiterate how I am feeling and see if she will refer me to a rheumatologist or do some tests to rule out autoimmune diseases like lupus or Crohn's.

    But, I was wondering if my symptoms actually sound like RA to anyone on these forums. I'm afraid to Google symptoms because that's a slippery slope of anxiety that I dont need, but I have had friends with autoimmune diseases tell me they think my symptoms are very similar and that I should see a rheumatologist.

    I'm just worried this is somehow all in my head and I'm wasting my time trying to get in to see a doctor that probably wont even be able to see me for months. What do you all think? I appreciate any input

     
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    Old 07-02-2019, 08:47 AM   #2
    quincy
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    Re: Need help getting taken seriously

    One never wastes time seeing doctors since they are the ones who can do tests. But in saying that....not all doctors do all pertinent tests.

    Blood testing for RA can be done. A rheumatologist would be a good start.

    Are you having gastro issues? No blood tests will determine Crohns or UC. Do you have autoimmune disease in your family history?

    I have a few autoimmune diseases and have had pains since I was a kid. Growing pains was the phrase I heard a lot. I'm guilty of not exercising....which has recently been on my mind to now take seriously in my aging years.

    I don't think root cause will be found unless you have genetic testing...but do start with family history regarding autoimmune and ask to be tested based on that if yiur symptoms match.

    My recent diagnosis is (secondary) Sjogren's (which my sister has), and the only doctor who took me seriously regarding that was my liver specialist... and she sent me to a rheumatologist. From blood tests, she would have said probably not, but a lip biopsy confirmed it. She also mentioned it's unusual for someone to not have a primary such as lupus or RA...which i don't. But I do have primary biliary cholangitis...i never asked if that could be a primary now that I think of it...hmm.

    I hope you find your answers....it can take a while.

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    Old 07-03-2019, 06:40 AM   #3
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    Re: Need help getting taken seriously

    Jcmadchats,

    If you have an autoimmune disease, that might not be so bad because in recent years it has been discovered that this type of health issue can largely be controlled, or even cured, through diet, exercise and stress control. Some doctors have reported curing people of all kinds of autoimmune diseases like MS and Lupus.

    At any rate, I highly doubt you will find a cure by taking a drug. Drugs, in my opinion, are used to treat symptoms, they don't get to the root cause.

    Your doctors can only do so much based on what they were trained to do. So, if it's an autoimmune disease, and it sounds like it is, what would you want them to do?

    In addition to genes running in families, eating habits also run in families, and it's been discovered that genes can be changed by changing one's lifestyle. Genes can be turned on or off based on our behavior, which includes eating habits and/or exercise etc.

    I'm not suggesting that this would be easy. That's because a very high percentage of people have already decided that their lifestyle/diet is good, so why change? Therefore, this option usually gets dismissed immediately. And so there won't be much chance for a cure for the same reason that 80% of all weight-loss diets fail long-term - changing one's lifestyle is difficult - taking a pill is easier.

    Anyway, if you're really are interested in finding "the root cause", you might try doing some research on the human microbiome, also known as the microbiota. To really understand all the implications, it will require extensive reading but it should be well worth it.

     
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    Old 07-03-2019, 07:33 AM   #4
    Jcmadchats
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    Re: Need help getting taken seriously

    Quote:
    Originally Posted by JohnR41 View Post
    Jcmadchats,

    If you have an autoimmune disease, that might not be so bad because in recent years it has been discovered that this type of health issue can largely be controlled, or cured, through diet, exercise and stress control. Some doctors have reported curing people of all kinds of autoimmune diseases like MS and Lupus.

    At any rate, I highly doubt you will find a cure by taking a drug. Drugs, in my opinion, are used to treat symptoms, they don't get to the root cause.

    Your doctors can only do so much based on what they were trained to do. So, if it's an autoimmune disease, and it sounds like it is, what would you want them to do?

    In addition to genes running in families, eating habits also run in families. But it's been discovered that both can be changed by changing one's lifestyle. Genes can be turned on or off based on our behavior, which includes eating habits and/or exercise etc.

    I'm not suggesting that this would be easy. That's because a very high percentage of people have already decided that their diet is good, so why change? Therefore, the diet option usually gets dismissed immediately. And so there won't be much chance for a cure for the same reason that 80% of all weight loss diets fail long-term - changing one's lifestyle is difficult - taking a pill is easier.
    Well, I wont know what I need to change if I have no idea what's going on. I'm hoping to get answers so I can say definitively that I have "____" and therefore I need to do "____" to feel better. It doesn't have to be a pill as you suggest, and frankly I'd rather not have to take any meds if I don't have to. But, I would like to have an actual reason to tell my employer when I'm feeling too terrible to come into work, instead of just a general "my whole body hurts and I'm running a fever". I do get what you are saying, it is important to make changes to one's lifestyle to feel better. I do exercise regularly, and as I stated above, it does help tremendously. Whenever I have weeks where I am not consistent with exercise, I suffer for it. I have recently started making changes to my diet to ensure I'm getting all my nutrients through food, as supplements have been shown to not get absorbed reliably and based on my blood tests, I'm definitely not absorbing everything with my supplement regime.Just by paying attention to macronutrients, I am able to tweak what I eat to get the most out of food, which I think as a society we all do a pretty terrible job of. It is pretty incredible when you look at diet how much Americans are lacking in terms of nutrients! We eat so many foods high in carbs and fat but low in protein and everything else the body needs.
    Anyway, so far my diet changes have been relatively easy, using the Samsung Health app to log meals and get a visual on what nutrients im doing well on and which ones I need more of. I'm hoping these changes will make the occurence of general malaise decrease in the future, as I have been having bad days multiple times a week and am fed up with it.

     
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    Old 07-03-2019, 10:15 AM   #5
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    Re: Need help getting taken seriously

    Quote:
    Originally Posted by Jcmadchats View Post
    Hi there, I am new to these forums. I just found out this week that I have arthritis in my foot after i started noticing my foot swelling up in the mornings and a great deal of pain. Aside from the pain in my foot, I have been feeling rather miserable for at least a year now, and I have found that I have some vitamin deficiencies. I thought taking supplements would make me feel much better, but so far I'm not feeling better and my levels have come up a little so I would at least expect some change.

    My doctors havent been looking into the root cause of the deficiencies and it has been my experience that doctors can sometimes have a hard time focusing on more than one symptom at a time, so I feel like I've got all of these things going on but my doctors arent looking at any of them as if they are related.

    I have suspected that I have some kind of autoimmune disease for a while, but I'm not sure which one and my doctors dont seem very concerned despite the fact that I am telling them I'm miserable. The symptoms I have that make me think I might have RA are: random aches and pains in most joints including ankles, knees, elbows, fingers, hips, and a stiff neck and shoulders; swelling and heat in some joints like fingers on my left hand, and my left foot; night sweats and trouble sleeping; hot flashes and sometimes low grade fevers in the mornings; extreme fatigue.

    I am 32 years old and have been dealing with chronic pain since I was 20, and I've never had anyone actually see arthritis in any xrays until this past week. My pain symptoms are better with regular exercise, but still present. I feel the absolute worst in the winter, when my neck and shoulders are painfully stiff to the point of having barely any range of motion. I am just at my wits end at this point, as the foot diagnosis this week came with a referral to see a podiatrist who won't be able to see me until the end of August, and the new doctor seems a lot like every other doctor I have been to who focuses on the one thing that is bothering me the most at that time and forgets about all the rest of the stuff. I'm going to give my new doctor a call tomorrow to reiterate how I am feeling and see if she will refer me to a rheumatologist or do some tests to rule out autoimmune diseases like lupus or Crohn's.

    But, I was wondering if my symptoms actually sound like RA to anyone on these forums. I'm afraid to Google symptoms because that's a slippery slope of anxiety that I dont need, but I have had friends with autoimmune diseases tell me they think my symptoms are very similar and that I should see a rheumatologist.

    I'm just worried this is somehow all in my head and I'm wasting my time trying to get in to see a doctor that probably wont even be able to see me for months. What do you all think? I appreciate any input
    Having specific joint pain and stiffness for so long is certainly not just in your head. Your symptoms sound very much like an autoimmune disease that involves arthritis, such as RA or lupus, or both, which I have. You need a thorough work up including specific blood tests for RA and lupus as well as inflammation markers (sed rate and CRP), CBC, chemistry panel and urinalysis. These diseases can cause significant damage to your organs and joints,, and early treatment can help prevent that damage as well as help you feel better. You do need a rheumatologist, but if it will be a long wait to see one, I would ask your PCP to check the ones mentioned above to get a head start. Lupus and RA can be associated with certain vitamin deficiencies, notably B12 and vitamin D. I would review the common symptoms of lupus and see if you have any others besides joint pain and fatigue. Make a list of those and any other things that bother you healthwise as they all may be related. Lastly, be assertive in asking for what you want! Health care is teamwork.

     
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    Old 07-03-2019, 11:07 AM   #6
    Jcmadchats
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    Re: Need help getting taken seriously

    Thank you ladybud, I will definitely talk to my doctor about those tests. I have had CBC, chem, and urinalysis done. My D levels are low but B12 is fine. Everything else was apparently normal. I have had bilirubin in urine before with no other weird markers in blood tests, but this last urinalysis did not show that. I have a list of all my various symptoms, related or not, but on my first visit to this new doctor I was too nervous to throw them all at her and once. I did tell her the main ones, like the joint pain, fatigue, and I also mentioned that my grandmother actually had RA. I was not assertive enough in asking for specific testing, but I will definitely now that I know what to ask for!

     
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    Old 07-05-2019, 06:48 AM   #7
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    Re: Need help getting taken seriously

    Quote:
    Originally Posted by Jcmadchats View Post
    Well, I wont know what I need to change if I have no idea what's going on. I'm hoping to get answers so I can say definitively that I have "____" and therefore I need to do "____" to feel better. It doesn't have to be a pill as you suggest, and frankly I'd rather not have to take any meds if I don't have to. But, I would like to have an actual reason to tell my employer when I'm feeling too terrible to come into work, instead of just a general "my whole body hurts and I'm running a fever".
    All the symptoms you have mentioned are part of rheumatoid arthritis. So if you need to explain why you're not going to work, you can tell your employer that you have rheumatoid arthritis. Symptoms may vary from one person to another but, in general, they are fever, joint pain, joint stiffness, general aching of the joints, swelling, accumulation of fluid in the ankles, and fatigue.

    You mentioned that regular exercise helps tremendously. Well, that's a good start, that's something I would have recommended. I don't know what your exercise consists of but it should not be excessive to the point that you don't feel like doing it again the next day. Just going for a walk, possibly brisk walking for 15 or 20 minutes should be fine.

    Microbiome is the name that has been given to the community of microorganisms that live a person's digestive tract. Depending on what we eat, it can be healthy or unhealthy. It has been estimated that there may be as many as 100 trillion microorganisms in the human body, living mostly in the lower digestive tract. And the main thing to remember is that we would not be able to stay alive and healthy without them. A healthy balance of microoranisms is one that keeps unhealthy organisms in check, breaks down food for energy and even produces certain vitamins. A healthy community of microorganisms will also serve to maintain a protective lining of endothelial cells on the walls of the small and large intestine. This endothelial lining lets nutrients into your bloodstream but keeps bacteria and undigested protein molecules out.

    When this lining is not kept in good condition, that's when trouble begins. Bacteria and undigested protein molecules get into your bloodstream and cause your immune system to go into overdrive. And that's what can bring about any number of autoimmune diseases.

    What to eat and what not to eat may not be easy to boil down to one or two sentences but I'll do my best to give you a general idea. Highly processed foods should be avoided in favor of natural whole foods. In other words, when you go to the supermarket, you should be doing most of your shopping in the produce department.

    The microorganisms that we need to stay alive and healthy feed on FIBER! That would be fiber from fresh vegetables, fresh fruit, intact grains, legumes, nuts and seeds.

    The average person today only gets about 10 to 12 grams of fiber per day, when the requirement is 25 to 35 grams. Fiber is a very important nutrient yet most people never pay any attention to it.

    If you're on a high protein diet like Atkins it's doubtful that you will ever get enough fiber. The more animal protein you eat, the more you will displace high-fiber plant foods.

     
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    Old 07-05-2019, 07:11 AM   #8
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    Re: Need help getting taken seriously

    You could have RA but you could have a host of other AI diseases as well. Please go see a good Rheumy, Infectious Disease doctor OR Neurologist and get the right testing done.

    You didn't mention a SED rate..this would show inflammation in the body. Its an important test to have ...

    My mom has lived with RA for 30 years and takes steroids when things get out of control. I have Multiple Sclerosis and live with it.. these diseases are not life threatening, but they can be painful. Go see the right doctors.
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    Old 07-05-2019, 09:00 AM   #9
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    Re: Need help getting taken seriously

    I'm not just going to claim I have RA when it could be something else entirely and I dont have any doctors confirming it.

    I do appreciate all the info about diet. I have made a really great start to eating mostly fresh fruits and veggies, fewer carbs, and have been trying to make sure I meet all my macronutrient needs daily. It hasn't been long enough to tell if it is making a difference yet, but I mentally feel better just knowing I'm taking the right steps to at least getting everything I need nutritionally.
    The good news is, my doctor has agreed to run a few tests to help rule out some different AI diseases. So I guess we shall see.

     
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    Old 07-06-2019, 11:38 AM   #10
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    Re: Need help getting taken seriously

    After checking two different sources, I thought you might find this interesting: One source said there are more than 80 different autoimmune diseases. The other source said there are more than 100.

    You might ask your doctor how many he or she knows of and how many of them will be tested for.

    As far as lifestyle goes, I hope I didn't give the impression that I covered everything. I only scratched the surface in my attempt to give you an idea of what it's like. There are many other things that can disrupt the immune system.

    Glad to hear you feel you're making progress. However, if weeks go by and you feel you haven't made enough progress, there are many other things that can be tried.

     
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