Rheumatoid Arthritis just sucks!

Melensdad

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FWIW I’m 60 and was diagnosed with RA at age 24 so I’ve been living with this for more than a couple of years. Methotrexate, which is now an entry point drug worked very well for me for 2+ decades. But not anymore.

I started HUMIRA injections this summer because I was in depression due to constant pain. I told my wife I was to the point that I understood why people just give up. Humira injections seemed to help after about the 4th injection. But now not so much. I’m just miserable again. The liquor store owner loves me, I’ve been supplementing pain meds with high priced limited edition bourbon. The pain seems to build during the day, I won’t drink before 5pm, but lately I’m looking forward to 5pm. Used to be 1 stiff drink. Evolved to 2 stiff drinks. On a bad day I’ll take 3.

I prefer alcohol to Tramidol or Tylenol-3 (codine) because Tramidol keeps me awake at night and codine tends to constipate me. The fact that I enjoy fine bourbon is a bonus but I can’t figure out how to get my United Healthcare insurance plan to cover the cost of a bottle of George T Stagg or Pappy Van Winkle.

Honestly I don’t wish this disease on my enemies. RA just saps the life out of a human.

I’m looking forward to next Friday when I inject my next Humira dose. Really hoping it helps.
 
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EastTexFrank

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My wife has suffered with it for years too, mainly in her hands but now it is moving in to her shoulders. She spends a lot of time dropping stuff but she won't take anything for it. She is allergic to a whole bunch of drugs so she doesn't take pills of any kind if she can help it. It got so bad that she talked to our doctor about HUMIRA but the possible side effects scared her off from taking it. That and the fact that she faints if she sees a needle. She can't watch me using my Trulicity pen injector for diabetes. She tried using alcohol (wine) but she is also one of those people who can't handle booze very well. Two glasses and she's fine but after the third glass she totally looses the plot. Two glasses of wine isn't enough alcohol to give any relief anyway. She also doesn't drink liquor so that not an option. She's a strong woman but really, at this point, she doesn't have many options.

And you're right, living with RA does drain you. Some days she is almost in tears.
 

Melensdad

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Got up this morning, 4 Advil down the hatch. Upper body arthritis pain woke me up about 4:30am.

Took a Tramidol about 8am.

Sometime between then I actually decided get on my exercise bike and work out the kinks in my body. That lasted, according to the fitness tracker, exactly 32 seconds.

Clearly I am having a "flare up" of my arthritis symptoms. Sometimes they only last a few days, sometimes they last weeks.

But I'm trying to be more productive. Already prepared the pot roast for todays meal. Cut up some Parsnip, Potatoes, Onion, Peppers, Butternut Squash and Mushrooms ... added a FROZEN chuck roast and tossed it into a cast iron dutch oven and into the oven at 250 to slow roast.

Little things that don't require me to reach UP to a top shelf can be achieved pretty easily. So cooking is a task I have been doing more of lately while the lovely Mrs_Bob tends to the baby needs, hangs the garland in the house, etc.

I find the longer I sit the stiffer my body gets. I also find the harder I work the more pain I am in. So for my RA flare up periods the recipe seems to be light task, then some rest, then another light task, then more rest, repeating this pattern all day.

The thing I am most concerned about at this point is that the HUMIRA is not working for me. It seemed to help for about 45 days, but if this is not a flare up of symptoms then the logical conclusion is that the new meds failed me. That would be bad.
 

EastTexFrank

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Bob, I'm sorry to hear about your troubles. I hope the flare up is short lived.

My wife's is some weird form of RA. Rather than affect the whole body, it starts, usually in the hands, and progresses. Her mother had the same thing. I don't know if they will ever find a cure but you would think that they would find some way to alleviate the symptoms.
 

Melensdad

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Bob, I'm sorry to hear about your troubles. I hope the flare up is short lived.

My wife's is some weird form of RA. Rather than affect the whole body, it starts, usually in the hands, and progresses. Her mother had the same thing. I don't know if they will ever find a cure but you would think that they would find some way to alleviate the symptoms.
80% of my pain is hands, wrists, shoulders.

So pretty much just like your wife's issues.
 

mtntopper

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For your hand pain, look up RS3PE. I came down with this and it took almost 6 months for Banner U of A medical center to get a diagnosis of the RA disease. I had seen about 15 different specialists at the U of A medical center. Then they put me on the Grand Rounds tour where I had about 50+ doctors in one day discuss and look at my swollen hands and shoulder pain. Shortly after this they did the RS3PE diagnosis and put me on prednisone for the extreme swelling and hydroxycholorquine for long term relief. I was at the point of 5+ minutes to even button my shirt. Today I am almost back to normal and able to use my hands again and have cut the meds to a very small daily dose.

Remitting Seronegative Symmetrical Synovitis with Pitting Edema (RS3PE) is a rare clinical entity that is easily missed due to lack of knowledge. It was formerly considered as a subset of rheumatoid arthritis (RA), but is now regarded as a distinct disease/syndrome.

 

NorthernRedneck

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I feel your pain. Literally. I'm on my own cocktail of pain meds every morning and night. Tramadol did nothing for me. Percs did nothing more than leave me like a zombie. I take medical marijuana in pill form every morning. Takes an hour to kick in. Lasts 12 hours with no buzz.
 

m1west

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My back looks like 5 miles of bad road I an X-ray, Like Brian I use medical marijuana edible, Around 5pm I take it and around 8 I go to bed and sleep all night. Does it work for everyone?? It works for me and I'm not taking Opioids.
 

Melensdad

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The lovely Mrs_Bob and Melen both are suggesting that I am crabby. They are correct. I am in pain.

The pain disrupts my sleep. I'm exhausted and in pain.

The pain disrupts my ability to accomplish tasks. So I'm frustrated, exhausted and in pain.

Tramadol pills during the day, bourbon in the evening, sleeping pills and iburophen at bedtime. Not mentally 100% given all that and not really happy about that, so I'm mentally dulled, frustrated, exhausted and in pain. All that makes for a crabby Bob.

Sent a message to my doctor through the My Chart app that our physicans group uses, my doctor is usually pretty responsive. I have a scheduled appointment on Jan 25 for a follow up. Wondering if we can move that forward.
 

jillcrate

Active member
I trust you have tried Motrin?

That really does a good job with inflammation and stuff..... I have 800MG pills I take when needed and they really do well...

EDIT:

I see you say you take them at bedtime....
 
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