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...

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Frazzled 05/05/2018

Hey kids,

So I have been dealing with progressively worse RA symtoms and other degenerative stuff since I started Humira in January. Between that appointment and the one in April, I had missed work or worked from home 24 days. Clearly I have high disease activity. I am on triple therapy plus Humira bi-weekly. And now that Spring is upon us in Minnesota, I want to be outside, but MTX makes me so photosensitive I feel like I have to put zinc oxide on my entire body before I go outside. This has never been an issue before because I am an olive-skinned Italian who loved the sun.

At my April appointment at the Mayo Clinic, we found continued high disease activity, plus a rhematoid nodule on my left middle finger's tendown - so I could get trigger finger. I had been on Prednisone 5mg daily since late Februry and continue on that now. I have pain that runs from my lumbar spine down my buttocks and into my hamstrings, and sometimes gets down to my feet. I was granted my request for two MRIs - one for the lumbar spine, which had increasingly been causing me pain, and one for my pelvis and hips. I had a consult with the Spince Center last Tuesday, and they recommended an SI/PSII injection of steroid to relieve that pain. I had that done the next day (Wednesday). So far, not much relief but I know I have to wait 7-14 days to see anything improve. I had this done on my trochanter regions for my hips and it didn't help at all.

I have a visit with my Rheumatologist in late June, and then off to Orthopedic Surgery in July. The MRI of my hips shows significant degeneration in my labra inside my hips, plus a cam deformity on my left hip. Not sure what all this means but I am likely going to have tohave some procedure to get that cleared up. Also, because of the RA attacking the sheating of my tendons (which was reported on the pelvis MRI) they are concerned that I could rupture my Achilles' on both sides, so I got for PT for that, plus my back issues, starting on Monday.

Today, I got up around 8am. I had coffee with my wife on the deck. I put together a list of things to do, and I ended up having that list changed because I needed an oil change and could fit in for that. I sat around, talked to a sales guy, and was in and out for 90 minues, and I came home a completely different person. I felt disabled. I felt like I couldn't do the other items that I wanted/needed to get done. I pushed through and finished my list mostly, but it was a struggle, and now I am heading off for a nap.

I am 48 years old and male. I am not used to feeling "disabled" after such a small amount of work. It doesn't hurt my pride so much as it hurts my desire to keep up with the house. We are now considering selling and moving to a townhouse where I would have no such responsibilities. It is starting to feel real that I won't be able to ride my motorcycle anymore, or do the yard work I once did, or even take care of the pool I so love to use. We're paying someone to open it this year because the thought of doing it myself makes me woozy.

So I will cotinue on with treatment. I feel like I am 72, except that my Dad was in better shape than I am whe4n he was 72. We have thought about moving to Colorado, but I am not sure that I can get the Mrs. to join in on that idea. I can't stand the winters here, and I could legally try marijuana again for my various aches - not just the RA, but other stuff - which gave me relief before. (Hopefully californialynn doesn't read this.) I am also going to try acupuncture because it is covered under my insurance.

So 9 months of diagnosis, and I feel worse than the day I was diagnosed. I am sure the treatments are helping, but it sure doesn't feel like it.

Anyway, sorry for the long post...it has been a long time since I wrote anything down. It feels good to share with others who understand.

MarleneJ 05/05/2018

Don't give up yet. It can take a while to get a good med combo. However, the fact is, RA does change our lives, and not for the good, as far as the physical.

I was in my early 40's when I got sick, I was incredibly active, too. RA is more likely to hit outgoing Type A personalities.

As long as your doctors are on it, there is not much more that you can do. Meds take a long time to work, or try out. It sometimes seems like the pace for such a serious disease is glacial.

Long posts are ok. MJ and acupuncture only treats symptoms, not the disease. So, use them if they help, but continue to fight for treatment that stops the progression of the disease.

PS. I think CaLynn left?

gingergirl1961 05/05/2018

Frazzled, I understand what you mean about feeling 72... my mom is 76 and works circles around me. She still teaches as a substitute teacher at a junior high. NO WAY could i handle even one day of that.

I have heard that before... that RA hits ppl that are type A and highly active. Boy, that was ME. I was into everything and it still wasn't enough. I biked, hiked, snowshoed, walked, worked, managed rentals, went to college for masters and massage therapy... on and on and on.... until RA and CFS hit me like a brick wall. Life hasn't been the same since.

I am in a crap place with my meds not working either.... The weather has been very strange here in the desert... not really spring... not really summer. But today is beautiful, so i am enjoying it outside.
Hugs and Peace
Ginger

Frazzled 05/05/2018

Yes, I understand that MJ and acupuncture, chiropractic, PT or any other therapy besides medication to slow my immune system from destroying my joints is just an adjunct therapy for what I am experiencing. I would never drop DMARDS or Humira for that. But it would be nice to tamp down the feeling of pain. Say what you will, but being in pain is not the most helpful thing in the world. I take Tramadol now, and results have been mixed but there are days I cannot go without it.

Today I got a lot of stuff done, but I realized that I had to do it in spurts. For instance, I was going to run and grab some stuff from a store, but needed to get my oil changed so went to do that first. I was energetic in the morning, and I came home 90 minutes later a changed person. I had no energy and felt like I got hit by a bus. I powered through a couple more tasks then came in for lunch, exhausted.

I rested for a bit - didn't get sleep this time, but rested by body. Then I was able to get up and finish all the other chores to my satisfaction. As a reward, I was given a gentle rain shower to water in my crabgrass preventer I put down. It was perfect. As you can see by how I work - I have items in my backlog that have to get done, and I need to figure out how to do it, within reason - I am a total Type A personality. This has me really down because I feel like I can't do the things I once could even 3 years ago.

I play bass at church tomorrow and will likely need some rest, but maybe not a nap, and then I can get on my motorcycle for a bit. Or maybe not. That is the nature of this I have learned. Yes can sometimes end up meaning no because I do have the physical strength or mental stamina to do what I want. A little pacing myself goes a long way.

I also have to realize this is the "new normal" for me. That means...I am heavier than I have been in years and that likely won't change much. I can live with that. I struggle with being comfortable in social situation where I have to stand for long periods of time. People can sit down with me. If I receive some relief at some point, that's great. I will take each day as it arises...and do what I can. And if I can't do more, and someone has an issue with that, we can talk.

And that is what is so hard about this. I am the breadwinner in the house, I have to be "on" when I work, and my wife gets what's left over. I think that horribly unfair, not just to me, but to her as well.

And yes, I think CALynn left, which is fine with me. Her responses were very short and did not read well. She had a tendency to treat anyone who didn't agree with her or have her "vast experience" as if they were an idiot. I ran into that several times here, and it stopped me from posting because I didn't need to be treated like someone who had the IQ of a dog treat.

WarriorGal 05/05/2018

So sorry!

Frazzled 05/06/2018

I think that's right, linzey. I can now pick out the things I want to do, and can do, and know that I can take rests in between. And when I get stuff done, which I have not for a very long time, there is a sense of accomplishment, even though I had to stop midway through the process and let my body and brain be for a bit. I am working, so I can pay for help when I need it - like landscaping, getting the bathroom cleaned up and out and put a new shower surround in, and other stuff. And of course, my wonderful wife, who is trying to deal with a husband who has been more comfortable horizontal than vertical, takes on much of the load as well. Somewhere along the way will be some balance. There has to be.

I often wonder if RA hits men worse than women...partially because they can be more type A. But also because the disease is often not looked at as much because of the conception that females are usually diagnosed, and not men. And then treatment is delayed, and the onset of issues after treatment are so significant because you've unraveled all of this junk in 3 years time...but probably have been dealing with it for years beyond that and you just ignored it.

Anyway, off to church...to play bass...of course on a night of interrupted sleep. Been up since 2am for no reasonable reason. Today sounds like a nap day to me.

Frazzled 05/06/2018

Hi Linzsey. That's what I think I was trying to say - that men fare worse because of the disease, perhaps because we have worse genes, perhaps because we have "toughed it out" for a longer period of time so symptoms are ignored and more damage is done before treatment has started, etc. However, I see a lot of literature that points in the opposite direction. I can only point out to a few people I know, those face-to-face and those on the web and in myself, that shows me greater joint destruction and that the joint destruction is more widespread in men. I also have it in my tendon sheathing, noted on several MRIs, and in larger joints, like my shoulders, spine and hips. I've been put on PT as a preventative measure so I don't rupture my Achilles' tendons because of what they see on imaging, what I feel, and where the pain is.

That said, it sucks for anyone who gets it. Nothing will give back the feelings I had just 3-4 years ago when I was so much more mobile and had so much more hand strength and could tolerate more standing, or working, or whatever than I can today. Four years might not be a long stretch in the scheme of things, but the damage I have seen done in me since has be...well, life-altering.

Either way, it is something I've learned to accept despite knowing it can shave years off my life, or cause all sorts of additional symptoms that will change what I can do every day. Best I can do, and we collectively do is just what you said: Live the best life we can, no matter what damage the disease the decides to cause.

SusieG 05/07/2018

You have all said so much here that I hadn't taken the time to put into words but is spot on. I have my own little pity party when I'm walking my dogs. First, being thankful that I am still able to do this, then apologizing to them that I can no longer give them what I've been able to in the not so distant past. I feel guilty. Then, once I'm done and home, I'm wiped out and my to do list sits there. I'm so on edge emotionally from the constant pain and exhaustion and then the guilt on top. Thanks for this place I can vent.

nonightshades2 05/07/2018

Frazz, I'm male, 57, was 6'3" and 210 lbs. Diagnosed Feb, 2013 and have as you say, a very active case. Now, 6'0 and 163lbs, most of the weight loss was muscle. You must learn to nap often the day of and day after MTX (I inject, easier on the tummy). Currently I'm on MTX and Actemra (biologic after Humira didn't keep working) and am weening myself from Prednisone (down to 2mg and Wednesday cut to 1). I do so understand the tendon sheathing but for me it was shoulders, arms, wrists, hands, ankles/feet.

At the risk of irritating callyn, here is what I do that does help me (may not you): I take the meds, I consume virtually no night shades (white potato, tomato, red/green pepper ie paprika, blue berry, peaches, strawberry, eggplant). Also severely limit red meat, severely limit processed sugar, zero alcohol. It's still active but if I'm careful with the diet then I come through decently with the weather changes, etc. The sun feels like it just sucks all the energy out of me and I live in the DEEP south so long everything and wide brim hats. Frankincense (undiluted) at the base of the skulls helps the mood tremendously which allows better sleep helping energy somewhat and it also helps pain as a topical rub.

Hate to say it but you need to pick your battles and learn to just admit "Sorry, can't do that." Both hands and feet are deforming, Lungs had been impacted (think plurasy feeling) which is why Prednisone for the last year and a half but seeing if I can drop it totally. BTW, don't just stop Pred, ween slowly or you'll have a Pred Crash!

You'll get there, it's different but you can get back to okay. Take the meds, try the diet and get used to the smell of Frankincense (it wasn't one of the three gifts to the Christ Child for no reason).

Frazzled 05/07/2018

Yes, nonightshades, I am having to learn a new way of eating. But I am going to try to stick to Paleo, which makes me feel much better. I got on the "wrong" diet and have yet to back off that...and now I need to reduce strain on my joints by losing some weight. It is a shame that ice cream is not on the Paleo diet. I am going to do what I think it right for me...and experiment and retrospect on it to see if it worked or not. That I how I do my work, and that is how I will try things, me thinks. Then, when I find that which leads to the least inflammation, I will do that. So far this weak, I have been able to work all day today, and had PT after that and that felt nice on my Achilles'. We'll get to my back next week. I was able to garner some strength to work on the pool a bit, but am now ready for bed. I don't drink at all, so that is good...the MTX would ruin my liver in a heartbeat with the way I used to drink. I don't like that MTX makes me so sun-sensitive...I may have to buy something to go over the pool to reduce the direct sunlight. But I am learning to say "no" and being fine with it. And a little Hemp Oil is good as well.

What has definitely happened, especially since Saturday and my episode of coming back from the car dealership exhausted and foggy, is that my wife understands more of what is going on. That really struck a chord with her. She saw the difficulty I was having...and it changed what she thought she knew about how I feel. I think it really became real for her.

Ok, off to bed so i can get up in the morning...one question for you...have you retired? Are you on disability? Or are you still working? I don't think I am at the disability state yet...but I fear that may be my fate someday. Trying like crazy to get ready for it when it comes so I can survive on much less than I make now.

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