Just a Vent. Overwhelm.

[WildflowerMom]

I am so overwhelmed with life right now. Like crazy overwhelmed.  

Ds20 quit his job (the right thing to do, btw) and is dead set on trying to get a job as a correctional officer at the local jail.  Why??  He’s got friends that work there so I guess he thinks he needs to do it, too.  It sounds like a disaster waiting to happen.  A type one diabetic in a jail setting.   I’m hoping they will reject him because of that.   But right now, he’s laser focused.  Meanwhile, an auto place found out he quit his job and wants him to work for them.  (He went to tech school for auto work and has gotten a reputation in the area as a good worker—which sounds great, except for the desire to work in the jail!).  It’s like talking to a brick wall who knows everything.   He is so freaking hard to get through to.  

Dh won’t get vaxxed.  I’m just about to lose it.   A while back his company said you had to be vaxxed by Jan 4 or something, but they haven’t said anything since.  I don’t really think they’ll actually do anything because of reasons I can’t really get into because it would reveal location, but suffice it to say, I don’t think anything will happen with his job, but right now we are living like something will, so looking into other jobs, no spending, etc.  I’m beyond angry about the whole damn thing.   I mean, just get the f’in shot!    Here I am about to get my booster hopefully this week (waiting on rheumatologists approval) and he’s still scared??  Ds is vaxxed. I’m vaxxed.  Stop being such a baby and do what’s right for your damn family!!   i’m just sick, literally, over the whole mess.   
 

I finally saw the rheum yesterday.  Lots of bloodwork.   Before this appt, I was hoping something would show up on blood work so I can know what’s going on and fix it.  Now?? After being in that office and watching all those women come in in wheelchairs, one even talking about how she peed herself the other day because she just felt it come on and started peeing in her chair.  Now??  Im freaking terrified of anything showing up.  God, please let everything be negative.  I do not want to be in the position those ladies are in.   If everything is negative, I’m going to wean off a couple of meds.  I’m tired and feel like I need to heal my body.  

my brain is about to explode.  I really want to slap the people I live with, except my dog.  She’s the only normal one left.   Can this year just end already, 2021 has been hell.  

[happi duck]

Many (hugs)

[Faith-manor]

I am so sorry! I can only imagine how stressed you are. Many hugs. 💓💓💓

[TheReader]

A zillion hugs. Right there with you. Different stressors, but similar, and just....yep. 

To top it all off, my annoying adorable stupid cat is sick, like when the vet said Thursday to bring her in I thought "I don't know if she has that long" and thankfully we go today, but....like, for real, I cannot take a cat death on top of all the other everything. 

Hugs, hugs, hugs, and prayers for you and yours and all the things. 

[Catwoman]

I'm so sorry, @WildflowerMom and @TheReader. 😞  Praying for both of you!!!

[Kassia]

@WildflowerMom and @TheReader  I am sorry, too.  

Right there with you.  It's been a hard hard year and it just keeps getting worse.  I'm really struggling to keep it together.  

Hope we all get some relief soon and that 2022 is so much better.

 

[Granny_Weatherwax]

@WildflowerMom @TheReader

I am so sorry. I hope this all ends soon and everyone finds stability and normalcy.

[Scarlett]

10 minutes ago, WildflowerMom said:

I am so overwhelmed with life right now. Like crazy overwhelmed.  

Ds20 quit his job (the right thing to do, btw) and is dead set on trying to get a job as a correctional officer at the local jail.  Why??  He’s got friends that work there so I guess he thinks he needs to do it, too.  It sounds like a disaster waiting to happen.  A type one diabetic in a jail setting.   I’m hoping they will reject him because of that.   But right now, he’s laser focused.  Meanwhile, an auto place found out he quit his job and wants him to work for them.  (He went to tech school for auto work and has gotten a reputation in the area as a good worker—which sounds great, except for the desire to work in the jail!).  It’s like talking to a brick wall who knows everything.   He is so freaking hard to get through to.  

Dh won’t get vaxxed.  I’m just about to lose it.   A while back his company said you had to be vaxxed by Jan 4 or something, but they haven’t said anything since.  I don’t really think they’ll actually do anything because of reasons I can’t really get into because it would reveal location, but suffice it to say, I don’t think anything will happen with his job, but right now we are living like something will, so looking into other jobs, no spending, etc.  I’m beyond angry about the whole damn thing.   I mean, just get the f’in shot!    Here I am about to get my booster hopefully this week (waiting on rheumatologists approval) and he’s still scared??  Ds is vaxxed. I’m vaxxed.  Stop being such a baby and do what’s right for your damn family!!   i’m just sick, literally, over the whole mess.   
 

I finally saw the rheum yesterday.  Lots of bloodwork.   Before this appt, I was hoping something would show up on blood work so I can know what’s going on and fix it.  Now?? After being in that office and watching all those women come in in wheelchairs, one even talking about how she peed herself the other day because she just felt it come on and started peeing in her chair.  Now??  Im freaking terrified of anything showing up.  God, please let everything be negative.  I do not want to be in the position those ladies are in.   If everything is negative, I’m going to wean off a couple of meds.  I’m tired and feel like I need to heal my body.  

my brain is about to explode.  I really want to slap the people I live with, except my dog.  She’s the only normal one left.   Can this year just end already, 2021 has been hell.  

((((Hugs)))) That is A LOT! 

That unreasonable focus on being a correctional officer....very similar to dss25 who insists on doing security work. I will pray they just won't hire him.  He could have a good job in the autobody repair world.  

As for your dh not getting vaxed.  I am so sorry.  I cannot fathom dealing with that.  I hope he will come to his senses before he loses his job and/or contracts the virus.  

Try not to worry about the your own health.....RA can often be controlled.  In fact I have a customer who has declined the meds (she is a nurse and doesn't like the possible side effects) and has controlled it very well with diet change and a lot of exercise.  Not that I think everyone can do that but I was pretty amazed she has kept hers under control for so long without meds.

[HS Mom in NC]

Woah!  That's so much all at once.  I hope something eases up for you soon.

[Katy]

I’m sorry, that’s a lot of stress. Praying you get a break & feel peace soon.

ETA:  maybe he could start with the Johnson & Johnson shot? It’s the old technology instead of the mRNA, and even if it isn’t as effective it’s also not as scary and it does count as fully vaxxed. 

ETA2: There’s also a bit of evidence from Europe that taking the J&J first and the mRNA booster later might provide better coverage than 2 mRNA shots

Edited November 30, 2021 by Katy

[Elizabeth86]

Yeah I feel ya on the vaccine thing. My dh won’t either. We lost my bil due to post covid problems in October and my niece just lost her boyfriend due to covid pneumonia. Also, dh won’t purchase additional life insurance per my request. I feel ya. Did I mention he smokes? I also found out who approves the vaccine exemptions for his work and all I can say is…well a mandate is pointless.  I’m so sorry you are going through this too.

[JustEm]

Hugs!!  I'm incredibly overwhelmed right now too for very different reasons but I really understand the brain going to explode feeling.  I specifically decided that I was going to take kids to dance today instead of my brother so I could just have 2 hours away from everyone while I waited for them to be done.  I decided those 2 hours need to only be about what I want to do because every other hour of the day lately has been about other people. 

I hope things get less overwhelming for you soon and the people in your life start making decisions that make things easier.

[WildflowerMom]

31 minutes ago, Katy said:

I’m sorry, that’s a lot of stress. Praying you get a break & feel peace soon.

ETA:  maybe he could start with the Johnson & Johnson shot? It’s the old technology instead of the mRNA, and even if it isn’t as effective it’s also not as scary and it does count as fully vaxxed. 

ETA2: There’s also a bit of evidence from Europe that taking the J&J first and the mRNA booster later might provide better coverage than 2 mRNA shots

Hmmmm.  I didn’t realize this.   Thank you!

 

and thanks to all of y’all!   I know y’all get it.   

[Pawz4me]

1 hour ago, WildflowerMom said:

I finally saw the rheum yesterday.  Lots of bloodwork.   Before this appt, I was hoping something would show up on blood work so I can know what’s going on and fix it.  Now?? After being in that office and watching all those women come in in wheelchairs, one even talking about how she peed herself the other day because she just felt it come on and started peeing in her chair.  Now??  Im freaking terrified of anything showing up.  God, please let everything be negative.  I do not want to be in the position those ladies are in.

Yeah, it's worrisome to me when I go to the rheumy and see people who are struggling. But do understand that lots of us with AI diseases can function relatively normally, at least on most days. I generally try not to borrow future trouble. I know my future could--probably will--include significant disability. I do what I can to keep myself healthy today. That's all any of us can do, whether we're already diagnosed with something or not. Hugs.

[MEmama]

I’m so sorry you have so much to deal with. The mental load of trying to handle other people's poor decisions is exhausting.

I feel you on the RA stuff. My labs have come up with nothing, but my hands hurt all the freaking time and in the mornings I can barely walk down the stairs because my feet hurt so badly and are so stiff so somethings going on and my sweet doctor is wonderful but she doesn’t have any thoughts on the matter so year after year I’m just swallowing my tears and frustration and pretending it’s fine. Ugh!

Sending you virtual ((hugs))! 

[Pawz4me]

39 minutes ago, MEmama said:

I’m so sorry you have so much to deal with. The mental load of trying to handle other people's poor decisions is exhausting.

I feel you on the RA stuff. My labs have come up with nothing, but my hands hurt all the freaking time and in the mornings I can barely walk down the stairs because my feet hurt so badly and are so stiff so somethings going on and my sweet doctor is wonderful but she doesn’t have any thoughts on the matter so year after year I’m just swallowing my tears and frustration and pretending it’s fine. Ugh!

Sending you virtual ((hugs))! 

You can have sero-negative RA. Or you can be sero-negative and then eventually be sero-positive. I was tested a couple of times when my symptoms were more on and off and everything was always fine. But a few years later my symptoms were always there and getting worse by the day, and by then I was sero-positive. If you're having that much pain it's really probably a good idea to press for a referral to a rheumy. Hugs.

[GracieJane]

If he quit his job, doesn’t that make the Jan 4th deadline meaningless anyway? Or do the other jobs require it? 

[MooCow]

Lots of hugs! Give yourself some grace, that's a huge load!

[Ditto]

Sending you many hugs.  You are dealing with a lot and all of them equally frustrating/scary/overwhelming.  Add them together and well, it stinks!   My professional prescription is a day on the couch with a big fluffy blanket, Hallmark Christmas movies (or whatever ridiculous tv makes you happy), a box of vanilla wafers, and a giant vat (or mug if you are vat-less at the moment) of hot chocolate.

PM me anytime!🤗

[WildflowerMom]

22 minutes ago, GracieJane said:

If he quit his job, doesn’t that make the Jan 4th deadline meaningless anyway? Or do the other jobs require it? 

Ds quit his job, not dh.  Sorry if there was some confusion!    If dh had to leave work, I don't know where he'd go with less than 100 employees, but with decent insurance.  

[Arcadia]

25 minutes ago, GracieJane said:

If he quit his job, doesn’t that make the Jan 4th deadline meaningless anyway? Or do the other jobs require it? 

 

1 minute ago, WildflowerMom said:

 If dh had to leave work, I don't know where he'd go with less than 100 employees, but with decent insurance.  

He can opt for the weekly test, that would diminish the having to quit issue.

https://www.whitehouse.gov/briefing-room/statements-releases/2021/11/04/fact-sheet-biden-administration-announces-details-of-two-major-vaccination-policies/
“First, the Department of Labor’s Occupational Safety and Health Administration (OSHA) is announcing the details of a requirement for employers with 100 or more employees to ensure each of their workers is fully vaccinated or tests for COVID-19 on at least a weekly basis.”

[MercyA]

Oh, man. Many  and much love to all. 

[Bootsie]

1 hour ago, Arcadia said:

 

He can opt for the weekly test, that would diminish the having to quit issue.

https://www.whitehouse.gov/briefing-room/statements-releases/2021/11/04/fact-sheet-biden-administration-announces-details-of-two-major-vaccination-policies/
“First, the Department of Labor’s Occupational Safety and Health Administration (OSHA) is announcing the details of a requirement for employers with 100 or more employees to ensure each of their workers is fully vaccinated or tests for COVID-19 on at least a weekly basis.”

 

Enforcement of a vaccine/testing OSHA mandate for employers of 100 or more workers is on hold:

On November 12, 2021, the U.S. Court of Appeals for the Fifth Circuit granted a motion to stay OSHA's COVID-19 Vaccination and Testing Emergency Temporary Standard, published on November 5, 2021 (86 Fed. Reg. 61402) ("ETS"). The court ordered that OSHA "take no steps to implement or enforce" the ETS "until further court order." The U.S. Court of Appeals for the Sixth Circuit now has jurisdiction over ETS challenges and DOL has filed a motion to lift the stay. While OSHA remains confident in its authority to protect workers in emergencies, OSHA has suspended activities related to the implementation and enforcement of the ETS pending future developments in the litigation. Note that the comment period is separate from the litigation.

[Arcadia]

23 minutes ago, Bootsie said:

Enforcement of a vaccine/testing OSHA mandate for employers of 100 or more workers is on hold:

I am aware of that. For the OP, the fact that the mandate currently has a testing option means she doesn’t need to worry about her husband losing his job regardless of the status of this mandate.  It does not sound like OP’s husband would vaccinate if required to keep his job.

ETA: I mean when I feel overwhelmed, the last thing I want is to have to worry about my spouse being unemployed and losing health insurance coverage. 

Edited November 30, 2021 by Arcadia

[prairiewindmomma]

3 hours ago, Pawz4me said:

You can have sero-negative RA. Or you can be sero-negative and then eventually be sero-positive. I was tested a couple of times when my symptoms were more on and off and everything was always fine. But a few years later my symptoms were always there and getting worse by the day, and by then I was sero-positive. If you're having that much pain it's really probably a good idea to press for a referral to a rheumy. Hugs.

This. So much this. Joint Damage is cumulative, so you want to stop damage as early and as throughly as you can. Your joints don’t heal themselves. 
 

Meds have been life changing for me.

[Melissa Louise]

It's overwhelming reading it, and I never know what to say, so please have a hug, or if you'd rather, this big pile of china to throw at the wall. And I'll sweep the bits up after. 

Hugs/china to @Kassia too. And @TheReader

[Selkie]

4 hours ago, MEmama said:

I feel you on the RA stuff. My labs have come up with nothing, but my hands hurt all the freaking time and in the mornings I can barely walk down the stairs because my feet hurt so badly and are so stiff so somethings going on and my sweet doctor is wonderful but she doesn’t have any thoughts on the matter so year after year I’m just swallowing my tears and frustration and pretending it’s fine. Ugh!

This is exactly how I felt several years ago - awful throbbing pain in my hands and feet. In hopes of avoiding medication, I decided to totally overhaul my diet, and it worked. Within days of changing the way I ate, the pain was gone and has not returned.

I stopped eating animal products, sugar, artificial sweeteners, and processed food. My diet consists of vegetables, greens, fruits, beans, legumes, whole grains, nuts, and seeds. I highly recommend giving it a try. At the age of 52, I have never felt better.

[Scarlett]

1 minute ago, Selkie said:

This is exactly how I felt several years ago - awful throbbing pain in my hands and feet. In hopes of avoiding medication, I decided to totally overhaul my diet, and it worked. Within days of changing the way I ate, the pain was gone and has not returned.

I stopped eating animal products, sugar, artificial sweeteners, and processed food. My diet consists of vegetables, greens, fruits, beans, legumes, whole grains, nuts, and seeds. I highly recommend giving it a try. At the age of 52, I have never felt better.

This is the same thing my customer did that has kept hers at bay for over 5 years.  And she is mid 60s.

[Pawz4me]

35 minutes ago, Selkie said:

This is exactly how I felt several years ago - awful throbbing pain in my hands and feet. In hopes of avoiding medication, I decided to totally overhaul my diet, and it worked. Within days of changing the way I ate, the pain was gone and has not returned.

I stopped eating animal products, sugar, artificial sweeteners, and processed food. My diet consists of vegetables, greens, fruits, beans, legumes, whole grains, nuts, and seeds. I highly recommend giving it a try. At the age of 52, I have never felt better.

I'm happy it worked for you, but . . what you had may have been something that was not an auto immune disease. Plus there are many of us who have eaten very, very well for decades and . . . nevertheless, here we are. I've eaten pretty much the way you describe for almost 34 years (since I was 25). Still . . here I am. It's disheartening when people imply that all anyone needs to do is tweak their diet.

My mother was also the type who thought she could treat her RA with diet and OTC supplements. By the time she took it seriously it was too late. She had lung and heart damage that wasn't treatable. She died much sooner than she needed to because she didn't take it seriously. RA and other AI diseases are so much more than just joint pain, and some of their affects can't be felt until it's too late.

[elegantlion]

I'm sorry for what you're dealing with. 

[Selkie]

2 minutes ago, Pawz4me said:

I'm happy it worked for you, but . . what you had may have been something that was not an auto immune disease. Plus there are many of us who have eaten very, very well for decades and . . . nevertheless, here we are. I've eaten pretty much the way you describe for almost 34 years (since I was 25). Still . . here I am. It's disheartening when people imply that all anyone needs to do is tweak their diet.

My mother was also the type who thought she could treat her RA with diet and OTC supplements. By the time she took it seriously it was too late. She had lung and heart damage that wasn't treatable. She died much sooner than she needed to because she didn't take it seriously. RA and other AI diseases are so much more than just joint pain, and some of their affects can't be felt until it's too late.

But I did not say that I had an autoimmune disease, or that what worked for me would work for everyone. I was simply offering my experience in the hopes that it may be helpful. 🤷‍♀️

Also, eating "healthy" means different things to different people, so I wanted to spell out exactly what helped me. It wasn't just cutting back on junk food, or red meat, or dairy (like a lot of people think when they think "healthy"). It was the complete 100% removal of animal products, added sugar, artificial sweeteners, and processed food. Most people have never tried eating that way for an extended period of time, so are not aware that it may help them feel better.

[prairiewindmomma]

13 minutes ago, Selkie said:

But I did not say that I had an autoimmune disease, or that what worked for me would work for everyone. I was simply offering my experience in the hopes that it may be helpful. 🤷‍♀️

Also, eating "healthy" means different things to different people, so I wanted to spell out exactly what helped me. It wasn't just cutting back on junk food, or red meat, or dairy (like a lot of people think when they think "healthy"). It was the complete 100% removal of animal products, added sugar, artificial sweeteners, and processed food. Most people have never tried eating that way for an extended period of time, so are not aware that it may help them feel better.

 

FWIW, I have sero-negative RA and I ate a completely clean GFCF vegan elimination diet (cutting out nightshades, starches, and other supposed triggers also) for an extended period of time and it did nothing for me.  I also swung the other way and tried the paleo diet. Again, nothing. I've tried intermittent fasting. I've tried various herbal remedies. Nothing. 

YMMV, obviously, but it's an obvious trigger to everyone with RA and autoimmune issues when people without autoimmune issues come in and say that their symptoms of autoimmune disease went away as it implies that those with true autoimmune issues could be healed if only they did x,y, and z. The danger is as serious as telling someone with slow-growing cancer that if they would just clean up their diet, then their cancer will go away. The reality is that for a very small percentage of people, that may be true because cancer can spontaneously remit.  There is a very real parallel to RA, though, in the sense that for a small percentage of people with true RA, the RA will remit---for the vast majority, it will not and the consequences of going with untreated disease are not small. 

We have these conversations several times a year, and have done so for at least the decade plus I have been here.  The real danger from them is that if the OP truly has an autoimmune disease and believes that they will skip meds and try the holistic approach first, interstitial lung disease and other organ damage along with cumulative joint damage can occur. I personally know several people who have had to had extensive joint surgeries because they did not use meds early in their disease course (whether to have additional children, to avoid the expense, out of fear, or out of the bargaining stage of grief---if only I did xyz then this will go away).  In fact, there are people in this board, whom I highly respect, who have lived this out also and now have fused joints.

If we want to have the conversation about the importance of good nutrition and exercise, I absolutely agree it important---but let's be very careful about distinguishing how our situation may be similar or different from OPs.  If you haven't been diagnosed with an AI/ie if you don't have "cancer"---then I think that you need to be upfront about that. FWIW, there's a reason that they often do celiac and vector borne disease testing along with the AI specific tests---there are a lot of things that mimic symptoms of joint pain and fatigue aspects of RA, but aren't RA/AI. Interstitial lung disease is a huge, huge worry for RA https://err.ersjournals.com/content/30/160/210011 and it's a leading cause of death. So is cardiac infarction. RA is much, much more than being tired and sore.

 

 

[Jean in Newcastle]

Neither the OP nor MEMama have been actually diagnosed by a doctor with actual autoimmune disease.  People on a message board cannot diagnose them. They can offer suggestions of what has helped- whether it’s lifestyle changes or visiting specialists and asking for specific tests. 

[Selkie]

4 minutes ago, prairiewindmomma said:

 

FWIW, I have sero-negative RA and I ate a completely clean GFCF vegan elimination diet (cutting out nightshades, starches, and other supposed triggers also) for an extended period of time and it did nothing for me.  I also swung the other way and tried the paleo diet. Again, nothing. I've tried intermittent fasting. I've tried various herbal remedies. Nothing. 

YMMV, obviously, but it's an obvious trigger to everyone with RA and autoimmune issues when people without autoimmune issues come in and say that their symptoms of autoimmune disease went away as it implies that those with true autoimmune issues could be healed if only they did x,y, and z. The danger is as serious as telling someone with slow-growing cancer that if they would just clean up their diet, then their cancer will go away. The reality is that for a very small percentage of people, that may be true because cancer can spontaneously remit.  There is a very real parallel to RA, though, in the sense that for a small percentage of people with true RA, the RA will remit---for the vast majority, it will not and the consequences of going with untreated disease are not small. 

We have these conversations several times a year, and have done so for at least the decade plus I have been here.  The real danger from them is that if the OP truly has an autoimmune disease and believes that they will skip meds and try the holistic approach first, interstitial lung disease and other organ damage along with cumulative joint damage can occur. I personally know several people who have had to had extensive joint surgeries because they did not use meds early in their disease course (whether to have additional children, to avoid the expense, out of fear, or out of the bargaining stage of grief---if only I did xyz then this will go away).  In fact, there are people in this board, whom I highly respect, who have lived this out also and now have fused joints.

If we want to have the conversation about the importance of good nutrition and exercise, I absolutely agree it important---but let's be very careful about distinguishing how our situation may be similar or different from OPs.  If you haven't been diagnosed with an AI/ie if you don't have "cancer"---then I think that you need to be upfront about that. FWIW, there's a reason that they often do celiac and vector borne disease testing along with the AI specific tests---there are a lot of things that mimic symptoms of joint pain and fatigue aspects of RA, but aren't RA/AI. Interstitial lung disease is a huge, huge worry for RA https://err.ersjournals.com/content/30/160/210011 and it's a leading cause of death. So is cardiac infarction. RA is much, much more than being tired and sore.

 

 

But again - I never said that I had autoimmune disease. The person I was responding to did not say she had autoimmune disease. I have never said anything about diet curing autoimmune disease. 

When my hands and feet hurt, I did not think I had autoimmune disease. I thought I had age-related aches and pains.

Another poster on this thread said she knows someone who treats autoimmune disease with diet. Maybe and you and @Pawz4me are confusing her with me? Or else just putting words in my mouth.

[Scarlett]

Good grief people. Can we not have our own experiences and opinions without getting jumped on?  One of my customers, and I have no reason to believe she was lying--gave me the name of her RA doctor here locally and we chatted for a long while......She is under the care of the RA doctor and is not taking the meds as long as she can get by without taking them.  That is an option.  If y'all can't do that or just don't want to then don't.  I don't think we need to feel responsible for other people taking OUR experience and handling their own medical needs incorrectly.

[Pawz4me]

24 minutes ago, Selkie said:

But again - I never said that I had autoimmune disease. The person I was responding to did not say she had autoimmune disease. I have never said anything about diet curing autoimmune disease. 

When my hands and feet hurt, I did not think I had autoimmune disease. I thought I had age-related aches and pains.

Another poster on this thread said she knows someone who treats autoimmune disease with diet. Maybe and you and @Pawz4me are confusing her with me? Or else just putting words in my mouth.

The problem I saw with your post is that you said “give it a try.” Which isn’t bad advice IF it’s “get checked out/tested and then give it a try.” Anyone who has symptoms of an AI disease needs to know whether they in fact have that disease or not. Delaying treatment, whether by ignorance (not seeking a diagnosis) or choice, has consequences. That’s a different thing than what @Scarlettis referring to, where the person she knows has been diagnosed. I’d still say that person is making a life threatening mistake in not being medicated, but . . that’s her business. 

[Selkie]

10 minutes ago, Pawz4me said:

The problem I saw with your post is that you said “give it a try.” Which isn’t bad advice IF it’s “get checked out/tested and then give it a try.” Anyone who has symptoms of an AI disease needs to know whether they in fact have that disease or not. Delaying treatment, whether by ignorance (not seeking a diagnosis) or choice, has consequences. That’s a different thing than what @Scarlettis referring to, where the person she knows has been diagnosed. I’d still say that person is making a life threatening mistake in not being medicated, but . . that’s her business. 

That doesn't fit with the facts of the situation, though. I said "give it a try" to someone who said she has had achy hands and feet for years, is under medical care, has been tested, but has not been diagnosed with an autoimmune disorder.

 

[Pawz4me]

2 minutes ago, Selkie said:

That doesn't fit with the facts of the situation, though. I said "give it a try" to someone who said she has had achy hands and feet for years, is under medical care, has been tested, but has not been diagnosed with an autoimmune disorder.

 

Exactly. That's why I encouraged her to see a rheumy. Because IME a PCP won't diagnose sero-negative RA. Many won't even diagnose sero-positive RA. They'll only run a basic arthritis panel and then either dismiss the patient's symptoms if there are negative results (as seems to be the case so far with @MEmama) or refer to a rheumy if the panel shows positive results. So as of yet @MEmamahasn't seen the proper specialist to (possibly) get a diagnosis.

[kbutton]

7 hours ago, MEmama said:

I’m so sorry you have so much to deal with. The mental load of trying to handle other people's poor decisions is exhausting.

I feel you on the RA stuff. My labs have come up with nothing, but my hands hurt all the freaking time and in the mornings I can barely walk down the stairs because my feet hurt so badly and are so stiff so somethings going on and my sweet doctor is wonderful but she doesn’t have any thoughts on the matter so year after year I’m just swallowing my tears and frustration and pretending it’s fine. Ugh!

Sending you virtual ((hugs))! 

I have a relative that had sero-negative RA that presented very much like this. She got treatment at roughly this stage, and she has been in remission for 25 or so years. Not everyone has such spectacular results (including other relatives with RA), but it's really worth seeing someone with other than a PCP. 

If you are in tears, you need a referral. 

@WildflowerMom, that's a lot to deal with. You really need answers, and I hope they lead to good outcomes for you.

[MEmama]

1 hour ago, Pawz4me said:

Exactly. That's why I encouraged her to see a rheumy. Because IME a PCP won't diagnose sero-negative RA. Many won't even diagnose sero-positive RA. They'll only run a basic arthritis panel and then either dismiss the patient's symptoms if there are negative results (as seems to be the case so far with @MEmama) or refer to a rheumy if the panel shows positive results. So as of yet @MEmamahasn't seen the proper specialist to (possibly) get a diagnosis.

 

1 hour ago, kbutton said:

I have a relative that had sero-negative RA that presented very much like this. She got treatment at roughly this stage, and she has been in remission for 25 or so years. Not everyone has such spectacular results (including other relatives with RA), but it's really worth seeing someone with other than a PCP. 

If you are in tears, you need a referral. 

@WildflowerMom, that's a lot to deal with. You really need answers, and I hope they lead to good outcomes for you.

I’m having labs done again soon and if they are negative again I’ll ask for a referral. It’s all too easy to second guess or not give myself permission to admit I feel as bad as I do. Thank you for the encouragement— I truly appreciate it. 

[TravelingChris]

11 hours ago, WildflowerMom said:

 

I finally saw the rheum yesterday.  Lots of bloodwork.   Before this appt, I was hoping something would show up on blood work so I can know what’s going on and fix it.  Now?? After being in that office and watching all those women come in in wheelchairs, one even talking about how she peed herself the other day because she just felt it come on and started peeing in her chair.  Now??  Im freaking terrified of anything showing up.  God, please let everything be negative.  I do not want to be in the position those ladies are in.   If everything is negative, I’m going to wean off a couple of meds.  I’m tired and feel like I need to heal my body.  
 

Okay about this.  I almost certainly had Sjogren\s in my teens.  Lupus around 19-20.  RA appeared at 23.  And Ankolysing Spondylosis probably started by later 20s. I wasn't diagnosed with Sjogren\s until I was 32 and didn't start first actual arthritic medicine until 35 and that was hydroxychloriquine (Plaquenil).  Lupus was suggested around 37 but not confirmed (and no one wanted it confirmed before Health companies were not allowed to keep you off insurance) until 50.  RA was thought to be RA negative and that was diagnosed 43 and changed to RA positive in early 2019 and AS at the same time.   I didn't start my first biologic until I was 54.  I didn't start another DMARD like plaquenil until I was 44,  That is the case with most of the people you saw in the waiting room.  

And yes, I am a very complicated case for all the physicians I see and yes, I have more issues like two types of neuropathy, dysautonomia which is not POTS, lymphadema, etc, etc as a result of the long attack on my body by my immune system.  But I am super happy to be alive and want to tell you that it doesn't come all at once and is coming a lot less in the people who get the latest intake on treatment which is to start strong and preserve function.

[TravelingChris]

10 hours ago, MEmama said:

I’m so sorry you have so much to deal with. The mental load of trying to handle other people's poor decisions is exhausting.

I feel you on the RA stuff. My labs have come up with nothing, but my hands hurt all the freaking time and in the mornings I can barely walk down the stairs because my feet hurt so badly and are so stiff so somethings going on and my sweet doctor is wonderful but she doesn’t have any thoughts on the matter so year after year I’m just swallowing my tears and frustration and pretending it’s fine. Ugh!

Sending you virtual ((hugs))! 

Which lab did your tests?  Because if it was LabCorp, get them done at another lab.  This is per doctor\s orders to us with both myself and my youngest when she was under my care from 8 or 9 doctors in 5 different states.

[TravelingChris]

9 hours ago, Pawz4me said:

You can have sero-negative RA. Or you can be sero-negative and then eventually be sero-positive. I was tested a couple of times when my symptoms were more on and off and everything was always fine. But a few years later my symptoms were always there and getting worse by the day, and by then I was sero-positive. If you're having that much pain it's really probably a good idea to press for a referral to a rheumy. Hugs.

Is that sero negative and then positive on rheumatoid factor or on anti CCP?  Cause I never had a positive RF but when I got the more accurate anti CCP test, I was positive.  

[Pawz4me]

21 minutes ago, TravelingChris said:

Is that sero negative and then positive on rheumatoid factor or on anti CCP?  Cause I never had a positive RF but when I got the more accurate anti CCP test, I was positive.  

I’m positive on rheumatoid factor. 

[Arcadia]

5 hours ago, MEmama said:

I’m having labs done again soon and if they are negative again I’ll ask for a referral. It’s all too easy to second guess or not give myself permission to admit I feel as bad as I do. 

 

4 hours ago, TravelingChris said:

Is that sero negative and then positive on rheumatoid factor or on anti CCP?  Cause I never had a positive RF but when I got the more accurate anti CCP test, I was positive.  

 

3 hours ago, Pawz4me said:

I’m positive on rheumatoid factor. 

It took my mom more than two years for the rheumatoid factor to turn positive. She did see a rheumatologist as soon as  she had swollen knuckles in her early 50s. 

[Timberly]

11 hours ago, Selkie said:

This is exactly how I felt several years ago - awful throbbing pain in my hands and feet. In hopes of avoiding medication, I decided to totally overhaul my diet, and it worked. Within days of changing the way I ate, the pain was gone and has not returned.

I stopped eating animal products, sugar, artificial sweeteners, and processed food. My diet consists of vegetables, greens, fruits, beans, legumes, whole grains, nuts, and seeds. I highly recommend giving it a try. At the age of 52, I have never felt better.

Ditto!

[TravelingChris]

3 hours ago, Arcadia said:

 

 

It took my mom more than two years for the rheumatoid factor to turn positive. She did see a rheumatologist as soon as  she had swollen knuckles in her early 50s. 

I wax faitly fortunate that the first rheumatologist I saw ehen I wax in my later 20's knes that I had sime sort of autoimmune arthritis ( I sctuslly had st least 3 out of 4 by then) and started me on prescription NSAIDS. And regularly tested me, and was a man.