Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I've felt pretty good the last couple of weeks. I wake up with stiffness and sore feet but not as bad as it has been in the past.I'm not on any meds as of yet. I have not been taking any OTC pain medications either.
I'm curious about how your pain progressed and what triggered it when it did hit hard.
Back in April I helped my husband build our goat pen. It was an all day project and I wore my red roper cowboy boots all day. Never had problem wearing boots all day. By the end of the day I was in such traumatic pain I didn't think I would be able to take my boots off. The next day I hurt so bad. I could not even dream of wearing shoes the next day.
At the end of August my husband hurt himself on a Monday night. He ended up on crutches and freaked. The doctor told him to stay off his feet for 3 days. We are self employed and that was a no no. He is a field service man and we already had a weeks worth of work and people are not going to reschedule. So the next day for the first time in our 25 years of marriage I rode with him all day carrying in his tool bag (35 lbs), taking parts back and forth to his truck, getting his crutches and putting them back and once at the customers house, standing while he worked. By the end of each week I was in such pain, fingers and feet. I was miserable on the weekends.
If we go somewhere and walk around a lot over a weekend I am sore and need to recover a few days after.
So...my daily job consist of sitting in my home office running the show. Paperwork, answering phones...etc. I do some chores...laundry, kitchen stuff and the like but mostly am sitting 75% of the time. I feed and muck out horses and goats every morning as well.
Since I am in the early stages of the disease (I think) I am wondering who else started this way too? What sets it off?
I almost feel "normal" although I am positive for RA and even have nodules.
I have a friend that had swelling, pain and stiffness in her fingers, was tired all the time and some days could not get out of bed. She even quit riding her horse. She was negative for RA. She recently went gluten free and all of a sudden she sees the light at the end of the tunnel. So of course it's making me think. I barely eat anything with gluten due to my gastric bypass anyway.
Even with a positive RA factor and all the signs and a diagnoses did you ever go into denial or think maybe they're wrong and you were not
RA?
This disease hit me hard and fast but now feels like it's tapering off. Is this normal?
Are there good days and bad days?
I'm curious about how your pain progressed and what triggered it when it did hit hard.
Back in April I helped my husband build our goat pen. It was an all day project and I wore my red roper cowboy boots all day. Never had problem wearing boots all day. By the end of the day I was in such traumatic pain I didn't think I would be able to take my boots off. The next day I hurt so bad. I could not even dream of wearing shoes the next day.
At the end of August my husband hurt himself on a Monday night. He ended up on crutches and freaked. The doctor told him to stay off his feet for 3 days. We are self employed and that was a no no. He is a field service man and we already had a weeks worth of work and people are not going to reschedule. So the next day for the first time in our 25 years of marriage I rode with him all day carrying in his tool bag (35 lbs), taking parts back and forth to his truck, getting his crutches and putting them back and once at the customers house, standing while he worked. By the end of each week I was in such pain, fingers and feet. I was miserable on the weekends.
If we go somewhere and walk around a lot over a weekend I am sore and need to recover a few days after.
So...my daily job consist of sitting in my home office running the show. Paperwork, answering phones...etc. I do some chores...laundry, kitchen stuff and the like but mostly am sitting 75% of the time. I feed and muck out horses and goats every morning as well.
Since I am in the early stages of the disease (I think) I am wondering who else started this way too? What sets it off?
I almost feel "normal" although I am positive for RA and even have nodules.
I have a friend that had swelling, pain and stiffness in her fingers, was tired all the time and some days could not get out of bed. She even quit riding her horse. She was negative for RA. She recently went gluten free and all of a sudden she sees the light at the end of the tunnel. So of course it's making me think. I barely eat anything with gluten due to my gastric bypass anyway.
Even with a positive RA factor and all the signs and a diagnoses did you ever go into denial or think maybe they're wrong and you were not
RA?
This disease hit me hard and fast but now feels like it's tapering off. Is this normal?
Are there good days and bad days?
I still sometimes wonder if it might be Lyme disease masking as RA but I am stable now that I am on meds and I am in a medically induced remission. Sometimes I forget I have the disease except all the meds I take.
I also have peripheral neuropathy that caused horrible swelling in my feet I could hardly stand. They would go numb and burn. It was awful. I take medication for that now too and it is also connected to the RA.
It's a long slow ride to acceptance and even now, 4 years later I still want to deny I have it. Sigh
I feel for you and know what you're feeling. Hang in there.
It's likely they will find something to help you. Have patients and expect the unexpected. Only my humble opinion.
Thanks RayAA....I often hear the meds are worse than the disease. Maybe that's one reason my doc wanted to try something else first.
Thanks Lace! I definitely have learned not to push myself now. I'm active, do a lot of camping and we have horses we ride a lot. This summer we've rarely ridden due to humidity which is not common here in CA. Us and the horses are not use to it. I often wonder if I am using that as an excuse because I am worn out. I never want that to be true.
Anyway, I went into the doctor because one of my ears was still stuffy after a round of antibiotics. While I was there, I mentioned this weird pain thing that happened in my hands a few days earlier. I had been sitting in a night class when I experienced this sudden, sharp, stabbing pain in the bones of two of my fingers. It did not appear to be in the joints, but between them in the bones. Over the next hour, the pain intensified and I couldn't hold my pen properly to take notes. All of this was in my right hand. I also noticed a generalized swelling of the entire hand....both hands.
The nurse practitioner wrote a script for blood work. She wanted to test me for RA. She had poked and prodded several areas of my body and had elicited pain responses from me, so she was concerned. A few days later, I received a phone call from the DRs office, informing me that I tested positive for RA and I needed to make an appointment with am RD as soon as possible.
I looked my blood test results up online, since all of my DRs use electronic documentation these days. My RF was >6000!! Since normal range is 0-20, I thought for sure that this had to be false. But, I made the appointment with an RD anyway. Meanwhile, I looked up a lot of info on RA, which only convinced me further that my recent infection must have been the culprit, and once I saw the RD, I'd be given a clean bill of health.
I was sooooooooooo wrong. I went to the RD, she ordered even more tests and numerous x-rays. I was scheduled to return in 3 weeks, because that would be the magic 6-week mark necessary to make a diagnosis. Four days later, I couldn't get out of bed. I woke up to a level of body pain that felt like the worst flu I had ever known. I couldn't grip a glass of water for the life of me. My hands, wrists, feet, and ankles were swollen. My hip joints felt like someone had placed me in a vise grip while I was sleeping. The muscles of my arms, upper legs, upper chest, and back felt like they were all spasming at different rates. My husband had to put the four Advil in my mouth and tilt the water glass for me, because I couldn't do it. Any movement I made felt like I was trudging through mud. I laid there in tears until the medicine kicked in enough for me to get up and use the bathroom. It was horrific.
I woke up that way for three days straight before my pain level started tapering off.....ever so slowly. After a week of this, I ended up in my GPs office sobbing. He put me on Cymbalta and the lowest dose of Medrol (synthetic prednisone) hoping it would help. It didn't. The pain diminished to a dull achiness before the meds even had a chance to work and it has yet to go away.
My RF was in the 600s on my second blood test. But, I test negative on everything else.....no inflammatory markers, negative anti-CCP, negative for Lupus, Lyme disease, Hep C, lymphoma, leukemia, and whatever else she took blood for. Even my x-rays showed classic examples of healthy joints, except for my neck, which had signs of osteoarthritis (no surprise there). The RD thought that this could be early signs of RA, or a fluke, since my RF had gone down so dramatically. She decided to wait six months and retest.
I just got those test results back. Same thing....high RF, nothing else. However, I have a family history of RA...two aunts and a grandmother. I also continue to live with some form of bodily pain every single day. My RD made the diagnosis of RA with fibromyalgia as a distinct possibility as well.
I don't want to believe it, but I have come to some small level acceptance since the possibility first arose. So, when my RD prescribed methotrexate (MTX), I agreed. I asked a lot of questions and she offered a lot of information. This isn't what I want. I don't think it's quite hit me full-force, psychologically speaking. But, I'm also taking an anti-depressant for the depression that cropped up after 3 years of just not feeling physically ok. That may be helping me cope right now. Or, it could be the fact that I'm so focused on writing my senior thesis in philosophy that I just haven't had the time to really process it.
You are definitely not alone. I know how much it helps to hear the stories of others. I'm right there with you, doing the exact same thing. I do have good days and bad days. I've only been on medication for RA for two days, so my good days and bad days are my normal, unmedicated state. My pain level, in my opinion, ranges from 2-4 most days, with the occasional 5-6. I've become married to my bottle of ibuprofen. And for the past three days, I've been trying to ignore the fact that my pain level has spiked to a not-so-friendly 7-8 and all I want to do is lay down and have a good cry......
Because this sucks! And to think I have to fight this for the rest of my life? Must I? I really don't want to. Nor do I want to deal with medication side effects or complications, which are very real possibilities. I'm sick of feeling sick ALL THE TIME. So, yea, I'm right here with you. But, we have a tribe of people right here who get it, and we will manage.
i never looked for triggers that "set it off" including not analyzing the beginning or marking anniversaries of doom. i tried to limit restrictions from the beginning so that I could be the one to raise my kids and keep them in the house. so I was more focused on what can I shove down my throat medically.
denial is easy as long as restrictions and limitations remain palatable. as soon as they mushroom then you change course and look for relief under any corner.
don't look at anyone else's medical treatment or non treatment/ case of RA - it simply will not help. you can look at how others attitude their RA that is helpful. so are comparing accommodations, support groups, occupational products, and how to cook kale.
there is no normal. as unpredictable as that may sound, it is the truth.
whatever you can do keep doing it as hard and fast as you can.
don't listen to horror stories and don't listen to the snake oil salesmen (a al gluten).
as long as you can do it, you will do it. your limitations and restrictions will over take you (or they may not) and then you will know you have to change course until then, do it your way
depot
Thanks! That was the most awesome advice!
I want to print and frame that as a daily reminder. Thanks again!