Setbacks.

Working through the emotional toll of being in constant pain is tough. It’s hard to be upbeat when it went from isolated and manageable pains to chronic pain that has brought me to tears.

It was a big deal to give up on natural treatments and start taking the meds. I’ve been advised that the methotrexate (MTX) will take time to work. Hoping and praying that it will and with little side effects.

I finally got the mindset I needed to start drug treatment only to be knocked down again.

I was sick when I started the MTX. I didn’t know that I should have waited. My rheumatologist gave me a Z pack for the sinus infection and said to go ahead and take it. Not ideal I guess but we needed to treat the infection.

I never felt like I was 100% better after finishing the antibiotics. The cough just lingered. I’ve been exhausted all the time but kept going trying to balance rest with the movement that it’s so important for relief from the pain and stiffness.

At the urging of my husband I emailed my rheumatologist yesterday about the cough and she said I needed a chest x-ray. Off to Patient First because I couldn’t get in to my primary doc.

Doc said it’s pneumonia. Stronger antibiotics were prescribed along with a new inhaler.

And now I have to stop the MTX treatment for my RA until the pneumonia clears.

It’s mentally exhausting. I feel like it’s one step forward and two back. But I will not lay down and give up. I’m going to come back stronger.

My heart goes out to everyone that has chronic illness. Stay strong!

Stay the course.

It’s been a rough week. The RA symptoms are relentless. I’m still not taking any medications and trying to treat naturally but I’m becoming frustrated.

Last Monday I woke to agonizing pain in my feet and hips. Hey hips! Welcome to the party! My wrists were also hurting. I couldn’t walk. I couldn’t support myself holding onto to the bed to get across the floor because the pain in my wrists was so bad they were useless to me.

It took me four hours to get out of bed.

Then I guess because my immune system is just whack right now the sniffles that hit the household turned into a full blown illness for me. Fever, wicked sore throat, and cough for days.

I’m exhausted. Sometimes the fatigue is overwhelming.

I got a new bottle of CBD oil Saturday a week ago. This one has a higher concentration of CBD plus other plant compounds. The dosage on the label is 3 drops under the tongue morning and night. 6 drops morning and night if symptoms persist.

I started with the low dose Saturday and upped it on Wednesday. Thursday evening I had significantly less pain in my hands and feet. Friday and Saturday I had almost no pain.

I continued to rest to get rid of the upper respiratory thing I was fighting but was feeling so much better in my joints.

Then Sunday came and so did the pain. Back to a 7 out of 10 and by this morning a 10. I cried putting on my shoes for work. I couldn’t hold the hair dryer. It hurt to get dressed.

I felt like I couldn’t fight any more. I told my husband, Joe, that I was calling the doctor and giving up and asking for meds. I put a call into her office.

Shortly thereafter I got an email from customer service from the company where I purchased the new bottle of oil. It had additional dosage information for chronic pain and severe illness.

I can take 12 drops morning and night.

I don’t believe in coincidence. The email much like other things that have happened came at the moment where my frustration level was high and I felt like giving up and just taking the meds.

For now I’m going to stay the course. I’m going to take the increased dose and continue researching in hopes of getting this into a remission naturally.

Trial and error

I continue to take the CBD oil I purchased but have not been feeling as good as I did that first week. Although there are many studies that indicate it is a potentially good treatment there are no dosage guidelines.

So I’ve been researching more. I found an oil that has 1500 mg of phyto-cannabinoids and is approximately 99.2% CBD. The main difference with this new oil is that it also contains terpenes and fatty acids from the plant.

Research indicates that having a full spectrum of these components can yield better results. I also will need to ingest much less of it because it’s concentrated.

Last week I’d caved in and started taking the prescription NSAID, Meloxicam, to try and take the edge off my pain. My joints hurt less however, the side effect was a 10 pound fluid retention in just 5 days! I had pitting edema and was very uncomfortable.

I called my rheumatologist and she said that Meloxicam can do that to some people. Great….less pain but holding fluid. So I stopped taking it. Three days later I’m just about back to normal with regard to fluid but also back to normal with my pain.

I continue to find relief when I get in the gym and lift. Thankful for that.

So, a lot of trial and error as I try to find a solution that will work for me. I’m still determined.

Lost remedy

Today I had the second appointment with my rheumatologist.

I told her about the CBD oil and sudden change in my symptoms in the past few days.

I waited for the awkward silence or anticipated condescending lecture, but what I got was a pleasant surprise.

She was aware of the studies that I told her about. And she said that we are seriously lagging behind in our research into alternative treatments in the US.

I also mentioned the blood type diet that I’m looking into and my preliminary findings there (I’ll post in detail about that soon).

She was very understanding and said she’s ok with following me for three months while I use the CBD oil and journal my results.

She wants me to continue taking just the CBD oil for 6 weeks without drastically changing my diet so we will have a better idea of whether it’s working or not.

She does want me to get some more blood work done to get a baseline of numbers to monitor the disease and x-rays of my feet and knees to do the same.

And there’s the understanding that if I have a flare that is bad that I can call her and we can discuss some treatment.

I was very pleased with her willingness to follow, and monitor me while allowing me to explore my body’s ability to respond to natural treatments.

So I’m going to continue taking the CBD oil and in 6 weeks alter my diet more. I’m hopeful.

Came home this evening to my topical CBD salve that just arrived – www.lostremedy.com. Here’s to another option for treating the pain and inflammation!

Hopeful.

After two horrendous days I’m feeling hopeful. The past two days have really tested my limits. I was beginning to question whether I would be able and willing to continue trying alternative treatments or just throw in the towel and tell the doc this week to put me on meds.

This morning was another day of excruciating knee pain. I could barely walk this morning when I woke up and fell (fortunately caught myself before going down completely) as I was making my way downstairs to see the kids off for the first day of school.

That had me shook up. I sat in the living room and waited for the kids to leave for school. I was in pain. I didn’t even take their pictures as I have done every year on the first day. That upset me when I realized too late.

I sat in my chair praying that the pain would relent some. Finally an hour or so later I got up again. Gritting my teeth through the pain I started moving around the house a bit. I had lots of things to do today and needed to get going. I drank my coffee and took the CBD oil.

I had a hard time getting into the Jeep to leave.

As I was out running all my errands for home and work I noticed something. My knees still hurt. But my knuckles that have been hurting nonstop for weeks on end weren’t hurting. The one in particular that I took a picture of this weekend…wasn’t hurting. I could close it completely to make a fist. It didn’t hurt.

Tomorrow marks one week of taking the CBD oil. Maybe it’s starting to work.

I went to the gym and got a decent chest workout in. As is typical when I’m lifting my pain stopped while working out.

Hours later, my knuckles are still pain free and my knees barely hurt.

Maybe it’s starting to work. I’m hopeful.

More to learn.

After being able to power through and hit the gym yesterday and feel pretty good…today has me almost beat.

I was awakened in the middle of the night when my knees decided to join the party. Pain. It’s a funny thing really.

Today walking is very difficult. The pain in my knees is relentless.

I’m really praying that the CBD oil will start to help. I increased the dose to 500 mg a day yesterday from 200 mg.

I also noticed my one knuckle has some kind of small lump on it. That entire knuckle is very painful. And today I noticed just how swollen it is compared to the left finger that is not affected.

I texted my new friend and RA warrior in Arizona and asked her about the lump.

She said they’re RA nodules and they can come and go.

More research….

About 25% of RS sufferers get them. Ha! Well count me in then.

My friend asked if I’d bought CBD topical cream for my joints yet. I hadn’t but I did after speaking with her. Hoping it arrives soon.

So much more to learn.

What I’ve learned so far is that RA is fickle. The pain can come and go….at least so far. Here’s to tomorrow. It has to be a better day.

Determined.

I took a break for 2 days from the gym. I know I will have to strike a balance between exercise and rest. This is part of my “new normal” that I’m already struggling with.

I could have easily taken another day “off” today but chose to go and see what I could do.

A rough morning with pain had me a bit off so I started with 25 minutes on the stair stepper to warm up my joints and get my heart rate up. About 5 minutes in the pain was subsiding in my hands. At 20 minutes my feet were starting to hurt so I finished at 25 minutes. I’m trying to learn to listen to my body’s signals.

I decided to go hit the weight room and attempt a decent shoulder workout. Lifted heavy and it felt amazing. Managed to military press 75 pounds again! Haven’t been able to get that since my shoulder injury at the end of April.

And the RA took a little break…no pain anywhere.

At least that’s how it is at this stage.

I’m thankful for that. Lifting has become a passion. My own therapy. Alone time with my thoughts. A natural mood booster.

I’m determined to keep this part of my life in tact.

The journey begins

Everyone’s journey is different. I’ve never been a conformist and this new journey is no different for me.

Looking back now, the symptoms have been there. Overlooked, explained away, ignored. I’m extremely active so most of the joint pain was, in my mind, something I “did in the gym.” My dry eyes, and inability to wear any of the contacts my eye doctor gave me…probably from my high protein diet. My sore and swollen knuckles…my workout gloves must be rubbing them and making them sore.

The elevated rheumatoid marker a couple years ago which when retested was normal was a warning sign.

I could no longer ignore the signs when the joint pain became widespread. When it became difficult to walk when I got out of bed in the morning.

I honestly thought it was Lyme’s disease. We camp and hike all the time. Probably a tick bite. I’ll get a course of antibiotics and be on my way.

When my blood work came back in July my primary care doc called and gave me the results. She told me the possibilities, and what she thought I had. She referred me to a rheumatologist. I began to research.

I was devastated. The reality of being diagnosed with an incurable disease is overwhelming. I’m still trying to wrap my head around it. How is this possible? I’m in the best shape of my life. I’m in the gym 5+ days a week. My diet is clean. I’m gluten free. Strict with what I eat. No processed foods. I lowered my cholesterol 100 points through exercise and changing the way I ate. How is this possible?!

The joint pain has been escalating over the past several months to the point that I was unable to walk in the mornings.

My hands hurt all the time now.

The only relief I get is when I’m lifting in the gym. A few precious hours where the pain goes away.

I saw a rheumatologist in August and discussed with her my hesitance to take the immune suppressants that I’ve been reading about.

More research.

I found some information about CBD oil and RA that I’m taking to my rheumatologist next week. NIH article 1 NIH article 2

After completing a 10 day course of prednisone (I agreed to try it) and flaring only 2 days after stopping, I decided to start taking CBD oil. I am taking 200 mg of CBD oil daily. I started on August 31st.

I’ve stopped taking the prescription NSAID – Meloxicam that I was taking sporadically when I just couldn’t take the pain anymore to see how the CBD oil affects the inflammation.

I am going to see if my doc is comfortable with me trying it for a few months and monitoring me. My hope is that she will be willing to do this, and then order blood work to see if my rheumatoid marker goes down.

If she’s not I’ll be finding a doc who is willing.

I will continue to research and educate myself about RA and share my journey here.

Please share your comments and stories of your journey with me.