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  • #307340
    Woods1977
    Participant

    The Cynical World of Rheumatoid Arthritis- The Woods Files
    My story

    I never refer to Rheumatoid Arthritis as an “auto-immune disease”. I hate the word “disease”; it makes me feel like I have Leprosy. I prefer the term “disorder” or “condition”; it makes me feel more normal I guess…

    People don’t talk about RA like cancer or heart disease. Hell, I didn’t know what it was until I began to exhibit my first symptoms shortly before my 34th birthday. My favorite definition from the medical community is “the immune system gets confused and begins to attack healthy joint tissue for no reason”. I personally don’t buy into that crap explanation myself, but that’s standard medical definition we’re told today. You’ll also hear the word inflammation thrown around a lot too. In a healthy individual inflammation is a good thing; it’s part of the healing process. For those of us with RA, that inflammatory response doesn’t know when to turn off.

    My first symptoms of RA were stiffness/soreness in my pinky fingers. I know my body extremely well and knew this was completely abnormal so I began doing some research… RA was the first thing that popped up during my internet search. I immediately set up an appointment with my GP to do some blood work- sure enough, I had both an elevated Rheumatoid Factor along with an extremely high CCP of >250 and a positive ANA. Next stop: The wonderful world of Rheumatology.

    I remember that first visit to University of Michigan Rheumatology quite well, though I do my best to block it out; it was the worst experience of my life. They treated me like a freak- I felt as though I was some kind of science experiment. They wanted to quote “strike hard and strike fast” and put me on everything under the sun. I saw the good that “striking hard and fast” did for those poor souls in the waiting room at U of M- every single person looked absolutely miserable. All of them were old & decrypted using wheelchairs, walkers and canes. I told them I had to think about the treatment options and left. I never returned to University of Michigan again.

    The question now was, what was I going to do? RA isn’t a “Let’s wait it out” kind of condition… As days turned to months I became progressively worse. My hands were stiff and sore, and my knuckles were inflamed and red. My knees were extremely stiff and sore which made it impossible to stand for long periods of time, and I couldn’t get out of bed in the morning without frantically searching for my slippers because the bottom of my feet were stiff and sore. Eventually my wrists were affected; I couldn’t even stand with my hands on my hips without being in pain. Getting dressed was becoming quite a painful ordeal as well, along with getting in and out of my car. The very worst was getting on and off the toilet.. Oh yes, I’m going there! I came up with a maneuver where I sort of threw my behind on top of the toilet seat, then I would sort of rock forward to get myself up. When that became too much work I started looking for bathroom stalls with a handicap sign. I was essentially a 34 year old trapped in an unhealthy 80 year old body. I felt so alone and isolated- those were some really dark days. I just “knew” I was in some serious trouble, and ALL I could think about was the fact that I had RA. I spent a lot of time in denial when I was first diagnosed, then came anger, then the pity party. I had NEVER in my life encountered a problem I couldn’t fix- for the first time in my life I felt defeated and my spirit was truly broken. I remember feeling so insulted & pissed off when I told people I had Rheumatoid Arthritis and their response was “You’re too young to have something like that”. On the other end of the spectrum are those who wanted to save me. Although these individuals had the very best of intentions, I wanted to tell them to take their “unsolicited” advice and shove it where the sun don’t shine. The best was when someone sent me an internet link to the drug Orencia- are you kidding me? I’ve spent hours searching the Dead Sea scrolls- you’re not going to tell me anything I don’t already know about RA. The only unsolicited advice I want to hear is from my fellow “auto-immunies” and doctor- please and thank you.

    Now for my absolute FAVORITE topic related to RA: Drug Commercials

    There was a time when I would scream at the television and yell at my husband to change the channel, but over time I’ve learned it’s better to laugh at the actors and make fun of the commercials instead. The first 20 seconds generally depict an actor trying to portray a poor soul with RA. My favorite part is when the actor grabs their elbow and pretends to be in excruciating pain, or they try to screw the lid off a jar with no success. Finally, the remaining 60 seconds of the commercial is basically a “death disclaimer”, talking about all the wonderful side effects (i.e. certain cancers, infections, Tuberculosis etc.). OH, I almost forgot- if it’s a really good commercial they’ll even tell you how you can get the drug for FREE if you can’t afford it! Once again, thanks, but NO thanks.

    I spent hours upon hours searching the net until one day I decided to Google “Dr. Oz and Rheumatoid Arthritis”… America’s favorite doctor- it was worth a shot. Ironically, it was by doing so that I learned about AP (Antibiotic Protocol) therapy. There was an article on Dr. Oz’s site written by a guest doctor who used low doses of antibiotics to treat his RA patients. I was intrigued. I immediately began to Google “Antibiotics and Rheumatoid Arthritis”… Bingo! For the first time I actually came across something of interest. From there I went to a site called “Ask a patient.com” and looked up Minocycline…. Several patients were using it for their RA! I reached out to several of these people, several of whom using AP therapy with great success. It was from one of those patients that I learned about “The Road Back Foundation”.

    I reached out to the Road Back Foundation in July, 2012- they were able to provide me with a list of doctors in Michigan who follow the AP protocol for RA patients. I got an appointment to see Dr. K the same month. The starting dose was 50 mg/M-W-F. The first two weeks were pretty uneventful. Week three produced a nasty flare that lasted about 7 days. Shortly after week four I woke up with virtually NO pain- period. I thought it was a fluke… but day after day went by and I continued feeling pretty good!

    I’ve had lots of ups and downs and setbacks since July, 2012 and I still have a long road ahead, but overall I can honestly say I’ve been doing pretty well on the AP protocol. Even with my setbacks I can do almost everything I did “pre-RA” with exception of scrubbing my kitchen floor on my hands and knees. Otherwise I’m a “free lady” for the most part, and I no longer obsess over my RA. My inflammation levels are all within a normal range, and the best part is that I’m typing this story PAIN FREE WITH NO PAIN MEDICATION… How would I sum things up at the moment? I have RA- RA doesn’t have me.

    I’d like to be clear that I’m not a doctor- I’m just a patient trying to fight a nasty condition. I’m sure some of you reading this might be angered by how I “mock” the medical community and the conventional drugs used to treat RA- it isn’t my intent to anger you, it’s just my sense of humor and how I get through life. To those of you who are successfully using biologics and have a life I am sincerely happy for you and I do NOT judge! RA is a NASTY condition that can ruin a person’s life. I would never, ever knock someone who has found relief from this condition- period. The people I’m reaching out to are those of you who have had bad reactions from the biologics, or maybe you’re like me- simply too afraid to try the conventional route.

    Knowledge is power and there is strength in numbers. By having a community of “like minded” individuals we have a great deal of wealth!
    Last edited by Woods1977 on Sat May 04, 2013 3:08 pm, edited 6 times in total.

    #367315
    Woods1977
    Participant

    Monday, March 4
    Okay, I’m done freaking out (for now anyway)… Thanks to those of you who reached out to me- freaking out isn’t going to do any good… so rather than freak out, I’ve got a game plan:

    TODAY: Reached out to specialty lab that does Lyme testing- test kit is in the mail. Received names of Lyme doctors in my area. One of them is no more than an hour away and I’ve heard he’s good. I don’t want to take the Lyme thing and “run with it”, but based on my symptoms I want to check for Lyme, along with other “co-infections”.
    Tuesday, March 5: 8 AM appointment with AP doc- let’s see what he has to say about headache, dizziness, etc.
    Friday, March 8: 8:30 AM appointment with Eye Doctor

    That’s it for now friends… Will provide another update tomorrow. Get busy living or die trying, right! It’s unfortunate for people like us, but we really DO need to take our health into our own hands…. I’ve come too far to give up now. I’m so very grateful for all the wonderful people on this site; we all understand each other and have a wealth of knowledge…

    #367316
    Woods1977
    Participant

    UPDATE- March 5, 2013

    Went to visit AP doctor today. He agrees with my GP about getting my eyes checked along with an MRI, and mentioned I should see a neurologist. He strongly believes I’m suffering from “Adult Onset Migraines” (my GP also mentioned this as a possibility as well)…. I’ve got to be honest- this migraine crap isn’t sitting well with me. Nobody in either side of my family suffers from migraines (at least not that I’m aware of). Furthermore, my AP doctor doesn’t believe my problems are stemmed from Herxing, or any other “co-infection”. He did however agree to perform the following labs:

     Comprehensive Metabolic
     Complete Bloodcell Count
     Cortisol (AM)
     RF Factor
     Sed Rate
     TSH, T3, T4
     Anti- CCP (It’s been a long time since I’ve had this test performed)
     Mycoplasma
     DHEA-S (evaluate adrenal function)
     PREGNE (test used to measure the blood level of the hormone pregnenolone)

    While I’m VERY thankful that he’s doing pretty extensive blood work, I’m not going to take this “migraine” diagnosis and run with it. If they don’t find anything unusual in my labs, I’m definitely seeking the advice of a doctor who specializes in co-infections (i.e. Lyme etc.). I feel like crap EVERYDAY…. So basically I’m supposed to feel like this for the rest of my life? I don’t think so. Well, it’s off to another appointment this Friday for my eye examination, we’ll see what happens with that appointment.

    #367317
    Woods1977
    Participant

    Wednesday, March 6, 2013
    Went to visit AP doctor today. He agrees with my GP about getting my eyes checked along with an MRI, and mentioned I should see a neurologist. He strongly believes I’m suffering from “Adult Onset Migraines” (my GP also mentioned this as a possibility as well)…. I’ve got to be honest- this migraine crap isn’t sitting well with me. Nobody in either side of my family suffers from migraines (at least not that I’m aware of). Furthermore, my AP doctor doesn’t believe my problems are stemmed from Herxing, or any other “co-infection”. He did however agree to perform the following labs:

     Comprehensive Metabolic
     Complete Bloodcell Count
     Cortisol (AM)
     RF Factor
     Sed Rate
     TSH, T3, T4
     Anti- CCP (It’s been a long time since I’ve had this test performed)
     Mycoplasma
     DHEA-S (evaluate adrenal function)
     PREGNE (test used to measure the blood level of the hormone pregnenolone)

    While I’m VERY thankful that he’s doing pretty extensive blood work, I’m not going to take this “migraine” diagnosis and run with it. If they don’t find anything unusual in my labs, I’m definitely seeking the advice of a doctor who specializes in co-infections (i.e. Lyme etc.). I feel like crap EVERYDAY…. So basically I’m supposed to feel like this for the rest of my life? I don’t think so. Well, it’s off to another appointment this Friday for my eye examination, we’ll see what happens with that appointment.

    #367318
    Woods1977
    Participant

    Thursday, March 7
    Today’s PSA: Let food be thy medicine and medicine be thy food…

    Still have the dizziness and “funny head” feeling today, although it’s less intense and more tolerable. I’ve been noticing my eyes are very light sensitive lately- I wish I knew what the hell is going on, I’m so tired of feeling this way! I also had some other strange symptoms yesterday- pain between my eyes and top of my nose, and my top teeth had some shooting pains!

    I just realized, my blogs fail to mention my good friend Rheumatoid Arthritis! I’ve been so wrapped up with the “funny head” stuff that I’ve completely forgot about my buddy RA! From an arthritis standpoint I’m still doing pretty well. Still have some stiffness/soreness in the AM, but most of its gone by the time I get out of the shower (usually about 34-45 minutes). I’m noticing that I’m able to move about more freely in the AM as well. My left elbow is still doing really good too… It amazes me that I can extend it out almost totally straight! Huge triumph indeed! If it wasn’t for the “funny head” crap I’d be feeling great! Right now I’m only taking 50 mg of Minocycline 3/wk; I know I need to work on increasing it soon, but I’ve been feeling so crappy from the “funny head” stuff that I’m dreading it.

    On another positive note, I did really well on my diet yesterday… Organic Gluten free oatmeal for breakfast, lots of fresh veggies and humus for lunch, some nuts during the afternoon for a snack, and some lamb and salad for dinner. I keep reiterating to myself “Let food be thy medicine and medicine be thy food”… I’m hoping the better I treat my body, the better it will treat me!!

    #367314
    Woods1977
    Participant

    FRIDAY, MARCH 8

    FRIDAY, MARCH 8…. TEST RESULTS AND EYE EXAM DAY
    EYES ARE 155% HEALTHY!!! No signs of Optic Neuritis!!!!! Vision has not changed since last test in 2011. This is a huge relief!

    Next step: MRI.

    Labs:

     Comprehensive Metabolic ***I won’t list each individual item, but everything was NORMAL
     Complete Blood Cell Count: Everything NORMAL with exception of LYMPHOCYTES (L) and MONOCYTES (H) *** Will ask Doctor about this
     Cortisol (AM): NORMAL
     RF Factor*** Increased since last test in November, 2012 
     Sed Rate: NORMAL
     TSH, T3, T4: NORMAL
     Anti- CCP (It’s been a long time since I’ve had this test performed) **** Original Test: 250> Today: 207.1 *** This has gone down since 2011
     MYCO Pneumo- IgG: November, 2012: 0.87 TODAY: 0.18 *** Lower than before.
     MYCO Pneumo- IgM: November, 2012: 0.14 TODAY: 0.04 *** Lower than before.
     DHEA-S (evaluate adrenal function): NORMAL
     PREGNE (test used to measure the blood level of the hormone pregnenolone) *** This test is still pending results

    Something I can’t figure out though…. My Creatinine level is LOW, and my BUN is HIGH….. Not sure if I should be concerned about this? I asked the doctor about it before and he wasn’t concerned. However, I’m going to follow up with my GP about this. Today was a huge relief, although I really, really want to figure out what’s going on. I’m still pending a few test results, will post once available. I’m still concerned of course, but at least my vision is fine.

    #367319
    Woods1977
    Participant

    Saturday, March 9

    How do I feel today? I would say I’m at the “lower end of decent” which isn’t horrible so I’ll take it! I have a slight nagging headache but nothing that’s putting me out of commission.

    I’ve done some thinking about all the feedback I’ve received concerning “the dizzies”… I’m going to try a few small experiments. First off, I’m going to try having a small handful of cashews or almonds as soon as I get up each morning. I’ve heard from several fellow “auto-immunies” that it’s really difficult to regulate blood sugar levels when you have an auto-immune condition. That said, I’m thinking some healthy fats and protein first thing in the AM could be quite good for me! I’m going to do this for 2 weeks and see what happens. If this approach doesn’t help then I think I’m going to back off the Minocin a bit back to 50 mg 2/weekly. I totally understand that you have to go through hell to get well on this protocol, but I still have to work and I have to “get by” in the interim.

    Interestingly, I recall reading in the Scammell book that RA is more difficult to treat in people like me- meaning, my disease progression has been very slow, as opposed to people who just have “mad crazy” flares right out of the gate. Every symptom I have has taken a LONG time to appear since 2011. I’m SO lucky that I don’t have any deformities at this time. Just some puffy fingers and slightly swollen ankles that only I can tell are swollen (I guess it’s a good thing I have naturally skinny ankles, haha). The only casuality I have is my left elbow of course, which is now almost perfectly staight once again (I still can’t get ovet that, I never thought my elbow would improve that much). Okay friends, I’m off to start the day. Let’s make it a good one!

    #367321
    Woods1977
    Participant

    Monday, March 11, 2013Test Run:
    Monday, March 11, 2013Test Run:
    Backing off Minocin for a few weeks…

    Surprisingly I’m feeling decent today; not a 100% but I’ll take it! The “funny head” feeling is very minimal today, almost where I can’t notice it. However, this past weekend was a completely different scenario.

    FRIDAY I woke up feeling okay but as the day went on (especially towards the evening) I felt terrible! It’s hard to describe other than feeling like “crap” along with a slight headache. However, joint paint/stiffness was very minimal. Saturday morning I woke up feeling decent, but as the afternoon set in I had a NASTY headache- it felt like my head was in a vice! Then the pain migrated from one side of my head to another, then it would settle between my eyes or above my eyebrows. This went on for about 3-4 hours then gradually began to subside in the evening. Sunday morning I woke up feeling okay- no headache this time, just the “funny head” feeling that began to subside in the late afternoon/evening hours. Towards the evening I started feeling really good- worked out, got a lot of stuff done around the house.

    On Sunday I began sifting through some older posts in the General Discussion forum; I wanted to see if I could find others with similar experiences (headache/dizziness) that I’ve been having. During my search I happened to find posts from others who had “like” episodes- one person (PhilC) mentioned that he had to cut his 50 mg tablet in half and increase by 25 mg, and eventually the headaches subsided. What’s been throwing me off about this is that the Minocin didn’t affect me this way when I first began AP in July, 2012, and I started on 50 mg M-W-F. I’m still on the same dose and now I’m having these problems… I was convinced it wasn’t the Minocin, but now I’m having second thoughts.

    On the days I feel like crap it’s difficult to function- I can’t keep going like this. Like everyone else I have a life to live that includes getting up at 5 AM M-F, and a Marketing job that requires me to be present in mind, body and spirit, haha. If I find I’m feeling better by decreasing my dose I can probably assume the Minocin is blame.

    GAME PLAN:
     Back off Minocin from 50 mg M-W-F to 50 mg M&F for 1 month and monitor progress
     If I find I’m doing better, I’ll increase the dose back to M-W-F, but will introduce day # 3 with only 25 mg as opposed to 50

    #367320
    Woods1977
    Participant

    Okay friends… I’m not going to boo-hoo about feeling dizzy, faint, light headed, head-achy or any of the above. Not today.

    Arthritis continues to improve despite my other um “problems”. My right arm/elbow is getting better and better, and I just realized in the last week that I’m now able to walk up and down stairs again somewhat normal! Although I’m slow, I no longer need to do one stair at a time.. This is another HUGE breakthrough for me!

    I wrote last week that I was going to reduce my Minocin to 50 mg 2/wk and drastically change my diet which I’ve been sticking to. I’ve been eating things like gluten free oatmeal and fruit for breakfast, cashews for a snack mid-morning, lots of raw veggies for lunch and using meat more as a condiment… Then salads for dinner. I must say, despite feeling like crap, my energy level has much improved along with my mood. It feels good to eat good!

    MRI scheduled for next Wednesday. Will keep everyone posted!

    #367322
    Woods1977
    Participant

    Saturday, March 23

    Typhoid Michelle

    Hey everyone… It’s been a little while since I’ve posted, mainly because I’ve been under the weather. I’m finally just getting over a super nasty upper respitory infection- so glad to be feeling better. I felt like Typhoid Mary!

    Aside from that nothing too much is going on. I wrote previously that I was going to back down on my Minocin dose from 3x/wk to 2/wk 50 mg. Not sure if it’s coincendential that my headaches/dizziness have subsided a great deal, but regardless, the dose seems to agree with me, so that’s my story for the time being and I’m sticking to it!

    I’ve been a bit more stiff than usual the last few days, but I haven’t been eating as well as I was before I got sick. Come Monday it’s “back to the grind” with my nutrution; I want to feel well again! 🙂

    I was supposed to have my MRI last Wednesday but I had to post-pone because I’ve been sick and coughing up a lung. Can’t very well have an MRI when your coughing all time, so I’ve rescheduled for Saturday, March 30.

    Otherwise I’m doing decent- not great, but decent. 😉

    #367323
    Woods1977
    Participant

    Saturday, March 30th
    MRI DAY!

    Finally had my brian MRI today- I’m scared to death!

    Today is Saturday, which means I’ll have to wait until Monday or Tuesday before I have my results… lovely. Oh, and the best part is that the place that perfomred the MRI gave me a disk to take home so I could view the images… REALLY? This is a sick, cruel joke, because everyone reading this knows good and well that I came home and started comparing my images to that of “healthy” MRI images, and with those with MS… Even though I don’t know what the hell I’m looking at! The only thing I’m almost positive of is that I don’t have a brian tumor!

    This is absolutely nerve wracking… I can’t stand it! I’m trying really hard not to freak out but I wish like hell they hadn’t given me the disk- it just made everything worse for me.

    Truthfully I have nothing positive to say right now so I’m not going to say anything at all. I’m trying really hard not to freak out but I’m not doing such a great job right now…

    #367324
    Woods1977
    Participant

    Wednesday, April 3

    Don’t cry for me Argentina….

    I have a few updates… First being, the doctor that treats my Arthritis did a ton of labs on me the last time I was in his office, one of them being a test to check my Pregnenolone hormone level. It’s my understanding that most doctors do not test for this, but it’s actually very important. It’s hard to find a lab that does the screening- he had to send it out to California and it took well over three weeks to come back. The results are interesting- my level is 17. The doctor said he would like to see it around 75!…. This tells me my level is substantially low! He has a supplement he would like me to try to boost this- he said that some people notice major improvements of “well being”, while others don’t notice much of a difference what so ever.

    Interestingly, I read that Pregnenolone has been used since the 1940s to help treat INFLAMMATORY DISEASES SUCH AS ARTHRITIS…. ! Hmmm… ???

    At any rate, I’m very interested to begin this new supplement to see if it offers any health benefit what so ever. I’ll keep everyone posted!

    As a side note, I’m still waiting for my MRI results, although I have my own self-diagnosis- I think I’m suffering from Idiopathic Intracranial Hypertension- almost all of my symptoms align with this diagnosis. However, I need to wait for the MRI results of course. I hate MRI of Southfield in Michigan… I had my MRI last Saturday- those morons had the nerve to send me home with a disk that contained images of my brain- REALLY? So of course I was at home trying to compare my images with that of people who have MS and other conditions… which was a very STUPID thing to do because clearly I’m NOT a radiologist! I didn’t see any MS type lesions on any of the images, but how the hell do I know what I’m looking at- there are over 100 images on the disk! It was not a good idea- I was upset all weekend. AND of course I called my doctor’s office today and they verified they have the report but the doctor hasn’t reviewed it yet. I know I’m not their only patient but WTH- it’s not like we’re talking about an MRI of my knee! Don’t worry about me Argentina… really, I’m fine. If I don’t hear from my Doctor by 5 PM I’m taking my as$ over to MRI of Southfield and picking up the report myself- I can’t wait another day, regardless of what the report says. Bad news is bad news, regardless of the source. What if I have a brian tumor? “Oh, sorry we’re just now getting back with you Michelle”… I mean really? Don’t worry about me!

    UPDATE!!!!!!!
    I DO NOT HAVE MS AND I’M NOT SUFFERING FROM A BRAIN TUMOR…YAHOO! The most interesting findings on my MRI were the following:

    Right maxillary sinus mucous retention cyst
    Scattered subcortal hyperintensities without evidence of acute ischemia on diffusion-weighted images.
    Partially empty sella without optic nerve sheath dilatatation, globe flattening or ventricular compression.
    NO supportive evidence/findings of optic neuritis
    Differential may include migraine, post inflammatory.

    That’s it. So, what next..???

    #367325
    Woods1977
    Participant

    Saturday, April 6

    Need to get my head on straight and get things figured out!

    Based on MRI results it appears the medical community has diagnosed me with the “classic migraine”. Next stop: The Wonderful World of Neurology. I’m going to visit the Neurologist for two reasons: First, I would like to review my case with a Neurologist one last time just to be sure nothing else is being overlooked. Secondly, I don’t want to tick my PCP off- I still need her for everyday “normal” stuff, and I want her to take me seriously when I do have problems. HOWEVER, I don’t need a reading from Ms. Cleo to tell me how the visit will go… Some guy is going to come in with a folder and review my results, then he’ll proceed to tell me I’m suffering from migraines. He’ll likely go on to tell me that “we don’t know what causes migraines”, but there are REALLY good medications for the treatment of migraines… At this point I will proceed to “tune him out”; it will be like watching a Charlie Brown cartoon “whah whah whah, whah whah”…. I will NOT take drugs for this- PERIOD!

    We have turned into a society that’s brain washed by both the medical community & pharmaceutical industry. Patients are seeing drug infomercials in TV and are walking into their doctor’s office demanding scripts- therefore we too (the patient) are partially to blame. Don’t get me wrong- I believe there are a lot of doctors out there with the very best of intentions (my PCP being one of them). However, the United States is on the brink of disaster- we are on the mists of a major health crisis. Our modality needs to change in a MAJOR WAY… We need to begin moving away from pills, and concentrate more on the “causatitive factors” of disease, rather than just treating symptoms… Which is a segue to my next thought- Is TMJ the cause of my dizziness/headaches/blurry vision?

    I was diagnosed with TMJ in November, 2012 by both my PCP and dentist.

    During my search of the Dead Sea Scrolls on migraines, I stumbled across an article about the relationship between migraines and TMJ… Interesting. As I continued reading I found that my headaches were much more in allignment with that of TMJ related headaches:

    QUESTIONS TO SEE IF YOU MIGHT HAVE A TMJ PROBLEM

    •1. Do you have frequent headaches? YES
    •2. Do you hear popping, clicking or cracking sounds when you chew? NO
    •3. Do you hear a grating sound (like crumpling of newspaper) when you chew? NO
    •4. Do you have stuffiness, pressure or blockage in your ears? YES
    •5. Do you hear a ringing or buzzing sound in either or both of your ears? YES
    •6. Do you experience dizziness frequently? YES YES YES
    •7. Do your jaws feel like they “catch?” YES
    •8. Do your jaws feel tight, difficult to open? YES
    •9. Does it appear that you can’t open your mouth as wide as you used to? YES
    •10. Does you tongue go between your teeth or do you bite on your tongue to separate your teeth? NO
    •11. Do your teeth ache? SOMETIMES
    •12. Are your teeth sensitive, especially to cold temperatures? SOMETIMES
    •13. Do you wake with sore facial muscles? SOMETIMES
    •14. Do you clench or grind your teeth during movements of frustration or concentration? YES YES YES
    •15. Do you grind your teeth at night? YES
    •16. Do your ears hurt? SOMETIMES
    •17. Does it hurt to move your jaw sideways? NO
    •18. Do your neck, back of your head, or shoulder hurt? YES YES YES
    •23. Do your jaws ache after eating? NO
    •24. Are you under a lot of stress? SOMETIMES
    •25. Have you been told that you might have TMJ? YES

    Finally, I read that the typical TMJ headache presents has pain in the temples and back of head. 95% of my headaches present this way…

    With the above being said I really want to look into TMJ as being a possible cause of my headaches/dizziness. Although I’m not completely ruling out Idiopathic Intercranial Hypertension as a cause, an important thing to point out is that I have no evidence of optic neuritis from either my eye exam or MRI. Optic Neuritis is often a clue when Idiopathic Intercrainal Hypertension is suspected.

    #367326
    Woods1977
    Participant

    Tuesday, April 9

    RA Update- The Good, the Bad, and the Funny.

    Due to my other “crap” (for lack of a better term) going on, I’ve neglected to post regarding my RA progress. Still feeling pretty good from a RA perspective! My knees have been acting up a tad bit lately, but nothing that has me out of commission. Regardless, I’ve reached two very successful milestones:

     I’m actually having days where I can WALK ON A HARD SURFACE FLOOR WITH NO SLIPPERS/SANDALS… This is a HUGE deal for me! It’s been months since I’ve been able to walk bare foot!

     I no longer have to perform the “throw myself on the toilet” maneuver when I need to use the bathroom! At one time my knees were so stuff/sore that I couldn’t bend them, so I came up with this move where I sort of just let myself “fall” on top of the toilet seat. I’m proud to report I can get on and off the toilet like a normal person! 

    I can’t make this stuff up people! Stay tuned for more RA updates….

    #367327
    Woods1977
    Participant

    Thursday, May 2
    Can it really be? Dare I toss my UGLY KITTEN HEEL SHOES???

    I haven’t written in a while, been really busy. Still doing really well from an arthritis standpoint. Aside from having a few days last week where my hands were super stiff and sore, the mornings of waking up feeling stiff/sore feel like a thing of the past! Although my improvement has been at a snails pace, I absolutely cannot complain. Even my right pinky finger (the first place I had symptoms of RA) is trying to get better; it’s not nearly as swollen as it was before. Now, the very best update (dramatic pause)… I’m WEARING HIGH HEELS TO WORK AGAIN!!! Ladies, I know you can appreciate this post! The last two weeks I’ve been able to wear high heels almost everyday and I feel really good in them!! I’m SO tempted to throw out the UGLY KITTEN TOE HEELS I bought last year… Maybe I’ll have a shoe party and burn them!

    I’m also proud to report I’m getting myself on and off “The John” like a normal human being… haha. Again, another huge milestone. It’s nice not having to continually looking for a handycap bathroom stall.

    Still got the “funny” head thing going on constantly, but the headaches have subsided once again for the most part. I’ve been dragging my feel about going to the doctors- I’m just tired of running to the doctors as this point. **sigh**…. Is life ever easy?

    To close I’ll say this.. I’m in Michigan and I can feel the warm summer sun on my skin with a beautiful sunset in my view. Does life get any better than this? I’m pretty damn close to sharing my story on the main website in the hopes it will encourage someone else to try AP.

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