RA in waiting.

[Sassiecassie333]

Hello,

I found this site endlessly searching for answers and to learn about what my life is becoming. About 4 weeks ago now, I woke up with pain in my foot. It was so bad, I didn't want to put weight on it. It felt a little better through the day, until the next day comes along and BANG!!! Even worse pain. I'm a regional truck driver. It's the middle of the week, 6 hours from home and I'm thinking I have a blood clot in my foot. It's the beginning of the pandemic, so even better. I had a virtual appointment with a doctor. he tells me to get to an urgent care. Oh no! Work had me drive home, whole time I'm thinking it's a blood clot, I had a blood clot in every vessel of my left leg and several in my lungs back in 2015, so, I'm panicking! I couldn't rest my foot right and I'm driving a big truck 6 hours to go home to the potential picking up of the coronavirus at the urgent care. I go there and guess what? I have to go to the er. the urgent care doesn't have an ultrasound machine. Oh yay! More exposure! My lucky day! So I get the thing done and no blood clot, phew! They also did 3 x-rays of my foot. They said there's nothing there. I looked at my results on my patient portal, said there is some deformity in my big toe. Well, now I really needed some answers. Work let me drive all the way home, losing out on loads I could've done and they don't see anything! I got an appointment at my doctor's office with a PA, the one week all year where there's one doctor in the office out of five, of course. I swear Murphy's law was chasing me! She examined my foot, saw the slight swelling on the bottom and proceeded to order bloodwork. welp, here I am, she did five tests, the crp was normal, the CCP was normal, the ana was negative. the esr/sed rate was positive and the rf was positive. I've been waiting for 3 weeks now and have until the 28th of may to have my first appointment with the rheumatologist. I see there's long long wait times to see this wonderful individual for everyone. I can't wait. I've been experiencing pain all over. It's hard to do my job, especially with the long periods of driving, being still. The stiffness really never goes away because of it. And my knees and an elbow are singing the blues, also my feet off and on. Tylenol seems like the only thing that's been helping. I'm afraid to take aleve and I already tried with ibuprofen but it didn't help and something about those two things and the coronavirus are bad juju. So I'm staying away from them. I'm so glad I found this site. I really needed to see that, ya, it probably is RA and I'm definitely not the only one that has gone through this.

I do have a question for the audience. my daughter, she's 15 was diagnosed about 4 years ago with tendonitis. Is it possible that she's got juvenile RA or something that I could've passed on to her. I told her the next time she goes to the doctor to ask for the bloodwork and I plan on asking the rheumatologist, when I bombard him with never ending questions about her issues too. I'm curious if anyone else has had a child with something like what you go through happen to them as well.

I'm happy to be here and I hope you all stay safe and healthy in the crazy times we are living in right now. God Bless.

Cassie

[Hidden]

Hi Cassie. All I would say based on my experience so far as diagnosed June started treatment in the UK in Sept back off it in Jan as developed issues with breathing on MTX etc (however this is not to put you off as it did a lot of good too) and now back on prednislone steroids.

IF you are definitely RA then the word patience is needed for this illness and rest and these are 2 words I did not want to hear and there is potenitally no quick fix.

Many on here got sorted with their meds and they will tell you that but many of us also have taken a lot of time too.

Re your daughter I totally understand the need to get her tested as I know RA runs in my family BUT don't assume get the bloods done and wait for results .

It is a time game and I have had to go from 40hrs standing a week to only 4 days a week 6hrs a day and not any lengthy standing up sessions or I just buckle.

Stay sane and this forum is a great insight to info etc and read the NRAS leaflets on here too.

[Sassiecassie333 in reply to Hidden]

Thank you so much Deeb. I'm going to dig in for the long haul then for sure. Thank you for your words of wisdom. Patience is definitely one of those things I'm going add to my virtues.

[charisma]

Hi Cassie

I really hope you do not have early RA. I would think that if CRP is not high then inflammation is not either but absolutely do not fret; best to seek expert input from PCP or better still, the Rheumatologist who can also advise about your daughter perhaps needing tested.

Bet you were mighty relieved to know it was not blood clots!

X-ray/ultrasound would show clearly any erosion (RA) or wear and tear (OA).

Is the USA not under lockdown yet? Or maybe you are a ‘key worker’ delivering essential goods?

One of my sons wanted to be a lorry (truck) driver from he was little; ended up a bus driver although he wanted to do electronics but was colour blind. He enjoys his job most of the time.

Take great care. COVID-19 cases identified are just the tip of the iceberg.

[Sassiecassie333 in reply to charisma]

I'm one of the essential employees. I haul a refrigerated trailer , so I'm bringing food around to help resupply our stores. We are definitely on lockdown. The president said until April 30th. I'll have more questions for the rheumatologist about that test. I haven't had a lot of swelling but the iga and igg antibodies, I have tested in the past for them and have none of them in my system. I'm wondering if I have a deficiency of them. I also have had gut problems and have been tested and told that I have celiac disease, only to be told 7 years later that I do not have it. Something is wonky here. It's just figuring it all out that's a pain.

Thank you for your good thoughts and wishes. I really appreciate that.

[Oshgosh in reply to Sassiecassie333]

It’s horrible,but this kind of stuff takes ages to diagnose.

I haveRA,lupus and an Interstitial. Lung. Disease.

Ive got the diagnoses,but am still struggling to deal with what it means to me.

Also worried about Covid 19.

You take care of yourself.

You need to stay safe.

I hope you manage to get some answers about your illness

[Sassiecassie333 in reply to Oshgosh]

Thank you Oshgosh. You definently stay safe as well. I've been dealing with Something since my pregnancy with my daughter in 2004. Trying to find what fits and ways to fix it, well it seems that I'll just have to buckle down and get ready to put together the biggest puzzle of my life.

[Oshgosh in reply to Sassiecassie333]

That rings a few bells.

In 1978 I had 2 bouts of tonsillitis.

Looking back I’ve had various problems ever since.when first diagnosed with lupus,I took part in some research.

It was just a tick box list. No space for any individual issues.

Please be careful with the Ibuprofen.i was on it for joint pain.

The doc put me on Naproxen.

When I was diagnosed with my ILD ( lung disease)

The doc said thatNaproxen could hav caused the lung scarring.

Take care,I hope all the pieces come together for you.

[Sassiecassie333 in reply to Oshgosh]

Oh my. I'm going to try naproxen next but it says the coronavirus can be worse if I end up catching it with that and ibuprofen, so I'm biding my time and taking only tylenol at the moment. side effects can be worse than suffering through the pain. That's awful! May God bless you and let you find comfort from the pain. Is naproxen helping you?

[Oshgosh in reply to Sassiecassie333]

I’m now allowed to take it any more.they think it may I have scarred my lungs. I don’t know.

I currently have morphine for the pain in my lungs,but t I can’t take it at present as am taking co codamol for a bad back.

I don’t think the stress is helping anything at present

I hope you are taking care of yourself and staying safe.

You are right about the side effects sometimes being worse than the pain. Take care