Latest Appointment

After accidentally missing my last appointment, someone canceled and I was able to get in on 6/22.

*takes a deep breath* I liked it when I first went into the office and she spent time with me. Now, it seems like she barely has time to check me out before she leaves the office. She asked where my pain is, I told her neck, shoulder hands and now my elbows (they never hurt before). She asked if the shot I received last time helped, I told her no, but I walked anyway. I did a week of exercise and it was ... so painful. I forced it and was down so much, it wasn't funny. Because my inflamation went down to normal, she said it was probably my fibro. Oh, and my blood pressure was 165/118. I've never been that high before. She said no shot because it didn't help and my BP was too high.

She had the nurse draw blood and give me a TB test (so we can be prepared for biologics if it comes to that). I go back today to get it read.

If the pain persists, then she will send me t a pain management secialist. Until my next visit in 2 months, I'm now on 60mg of cymbalta (up from 30), 2mg of folic acid (up from 1), 15mg of methotrexate (same), 2000mg of sulfasalazine (same). Tylenol or advil as needed during the day and a PM med at night.

By the end of my appt, my bp was 140/88.

A little frustrated. SSDD

Months of pain

The last time I went to my rheum, was in April. I had bloodwork done and it said my inflamation was down. I was also given a shot. It was supposed to help with the pain so I could exercise more. It did nothing for the pain.

I'm still on 15mg methotrexate every Friday, 2000mg sulfasalazine every day, and 30 mg of cymbalta every day. I am limited to acetaminophen, ibuprofen or naprosyn. Tramadol conflict with cymbalta, so I can't take that.

I tried walking after the shot, and it was not good. I forced it, regardless. I then gave up, tired of the pain.

I have gone to taking acetaminophen or ibuprofen PM medicines when Keith is home or at night, so I can get some sort of rest or relief from the pain. I know it only masks the pain, but I have to do something so I can function.

When I'm in this much pain, I really would just love to be held, cuddled, anything of the sort, because it reminds me that I'm loved, regardless of how I am feeling.

All I have wanted to do the past few months was cry. Today the pains are so sharp in my shoulders, I swear someone has an icepick and jabbing it into the bones. My hips are the same way.

The new nsaid the doc gave me is useless. Nabumetone. It also comes with a huge warning about heart risks. For prolonged use or for those people who have heart problems, high blood pressure or high cholesterol. Makes me leery of taking it. I've taken 2 and have had no relief. I would think the medication would be like most pain relievers - be affective after 30 minutes or so.

I missed my last appointment, and it was even for the better, because I couldn't drive. I just had the dates mixed arond. I am fortunate that I get to attend one this Wednesday. I need to get a list of concerns/questions going so that I am more prepared. I wish I had an adult who could go with me, to facilitate the questions, etc.

I try so hard to not let any of this get to me, but lately, I just can't help it. I hurt so much and it's affecting me mentally. I think it's affecting my children, too. Yesterday was too much. I couldn't do ANYTHING and it was Father's Day. I was able to make it out to lunch. I apologized so many times. I am so glad Keith understands.

I guess I am just needing a lot of TLC right now.

Ow?

Okay, since my last post, I did get another shot. It was apparently to help me get moving. Now I have to wonder if I even received medicine in the shot, because I felt no relief. However, not thinking, before I went to the doc, I took naprosyn. I wonder if that somehow skewed the blood results, because my inflmation was down.

Since then, my pain has come on strong, subsided slightly (after mtx on Friday) then come back again. The most I can do is sit and read/comment on twitter or facebook. I used to play World of Warcraft, but I can't even enjoy that because my hands hurt so bad. Voice command on that would be a lot better.

I took a survey that asked if I have problems with buttons, tying shoes, etc. I started thinking about my life over the past few years (if not longer). I've converted to bras that fasten in front (I can't move my arms to do the back fastens). I keep my hair in a ponytail constantly because I can't brush my hair, it hurts my shoulders/wrists/fingers too much. I've converted to a battery operated toothbrush because I of the pain when using a regular one. I bought a pair of "tennis shoes" that have no ties/back so I can just slip my feet in them. All my shirts are pre-buttoned so I can just slip them over my head. And whenever possible, I wear pants/shorts that require no zipping/buttoning.

I also started remembering when I first had back pain. I was 13. Knee pain when I was in high school. Both were attributed to my active life. I rode bikes, played volleyball (I dove for the balls), did gymnastics (not taught professionally), ran, walked, etc. Because the pain I had was always dismissed as "nothing" I just pretty much learned to ignore it.

By the time I was on my own, I was religiously wearing knee braces. I was not overweight, then. I was in the military and was very far below the weight allowance. I was still active, walking, running, dancing (a lot).

It was about the time I was 23 when fatigue started being a huge issue. Military doctors attributed it to stress and sent me to various stress management classes. Even with all the techniques, I was still tired most of the time, and if I wasn't kept busy, I would fall asleep very fast. Not one doctor thought of running blood tests or to check for Vit D deficiency.

Around age 23-24, I started experiencing more and more back pain. More hip pain (bi-lateral) and my knees and shoulders "crunched" when moved. I was still super active, rollerblading, running, walking, lifting weights, etc.

Then I got preg with my first child. Toxemia took over and I've been fighting my weight and blood pressure ever since. After him, my back hurt a little more than normal, but I kept being active. Then, my daughter came and she was vbac. same pain, same activity, but now officially diagnosed with depression. It would be 10 yrs after that when I realize I had been depressed since I was 11 or 12 years old.

It was somewhere after her and during our move to Texas my pain started getting worse. Mainly in my back and wrists. I could type anything for as long as I wanted as long as it was on an ergo keyboard. My ability to write for periods of time began diminishing as well, too much pain in my wrists/fingers.

It wasn't until I stopped being "busy" every second of the day that I realized I was in constant back pain, that my knees, neck, shoulders, wrists and fingers hurt. The back, knees and neck were the worst of it all.

I went to a chiropractor and found out my lower back was broken at some point. I was under constant care for 3 years then I got pregnant and I cut back on visits.

Even during all this, I was stil walking as often as I could. Then, I have our last child and life changed. I thought it was the lack of activity because I was on bedrest for 5 months, or even the c-section. But my hands started hurting more and more. I kept going, ignoring it. Figured it was over use. Then all the other joints began to chime in and remind me they hurt, a lot.

It took over 4 years for me to find a rheumatologist and a GP that listened when I said, "This isn't normal. I've never been typical in my life, something is WRONG."

Now, almost a year after the rheumatologist, I'm on meds, but the pain is crazy bad. I think it's because I went for so long without anyone listening/treating me. I also think it's because I spent so many years ignoring the pain, keeping busy to keep my mind off things.

Right now, I just know something has to give. Over the past 2 weeks, I've had to have my daugther help me put my bra on because I can't move my arms the "right" way. When she isn't here, I take a hot shower to relieve some pain for a while so I can force my arms to do what they need to do.

I feel so guilty having to rely on my children and husband to do things for me.

So, with my diagnosis of RA/Fibromyalgia and depression, I'm on 15mg Mtx weekly, 2000mg sulfasalazine daily, 30 mg of cymbalta daily, 1 mg folic acid daily. Plus, because I can't seem to absorb Vitamin D - I take 5000-6000 mg daily. No pain killers have been prescribed. I take 1000mg ibuprofen at a time, about ever 6-8 hours. Sometimes I'll take 1 naprosyn (200mg) but it won't touch the pain.

To get a shot or not

On 3/1/11 my rheum gave me a steroid shot because my flare was severely out of control. The relief was felt within 2 hours and amazing within 24 hours. After two weeks, though, I could feel pain coming back. By my appointment on 4/12/11, my hands, hips, elbows, lower back and neck were in pain. Not as severe as before, but definitely not fun. I'm now tolerating methotrexate and sulfasalazine well. Cymbalta is helping the fibro and depression. Now... if I can combat my fatigue. I was thinking how annoying it was to get a shot, feel the amazing relief, then feel it slowly come back. It's discouraging, in a way, because I can go do stuff, my body isn't battling as much (or so it seems) and I felt... "normal". All I wanted to do when the pain started creeping back in, was cry. I guess maybe one day I'll let that out. After talking with my rheum, she is going to review my bloodwork and then recommend some possible changes in my medication. I'm only on 6 methotrexate tablets per week and on the max dose of sulfa. It's been 9 months on MTX - 8 on the 15mg dose; 4 months on sulfa, 3 on the full dose. My options are for the increase in MTX and stay on sulfa; go to injection (we both want to wait until it's not an option before we do that) and stay on sulfa; or increase MTX and go to another injectable and remove sulfa. I do NOT like the thought of injecting myself. And I don't feel it's right to have my husband do it for me. My neck pain is more than likely RA related, by why is my lower back in so much pain (other than the fact it was broken at some point in life and didn't heal correctly). The recommendation to combat my fatigue was to exercise 30 min/day. I hadn't been raising my heart rate enough, I guess. I wish I had access to an indoor pool and the time to go do it. During the summer, I have access to a pool, and will have my 2 oldest to help with the 4 yr old, so I can exercise and play with them at the same time. I have an air walker and forced 30 minutes out, ended up taking an Aleve shortly after for pain. I've also walked about a mile, increasing my pace to get my heart rate up on 3/12 and 3/13. *sigh* I just have so much on my mind. Another "kicker" is my lymph nodes are inflamed. I will call tomorrow to schedule an appointment with my primary care doc for next week if they have not gone down. Any thoughts, comments are welcome.

Slowly coming back

Well, the shot lasted roughly 2 weeks and the pain is slowly coming back. I'm just so glad for the relief I had. Hopefully this level will last for longer and not get worse.

The Cymbalta is working well, too. My skin isn't on fire or painful to the touch, and my depression is more manageable. I knew it would work nicely for the depression, but didn't realize how it could help fibromyalgia.

I go back into the rheum in a few weeks. I think she is pondering changing my meds a little, because the inflamation rate just won't go down. I am glad she doesn't believe in giving me a steroid on a perm basis.

I have noticed, though, the longer I'm on MTX and Sulfa, the more dry my mouth gets. I'm going through water like it's.... water *giggles*

I wrote a poem about RA and the pain I feel, and how _I_ feel daily. Kelly Young, a great advocate for RA put it to music. Here is a link to her blog:

http://rawarrior.com/isolation-of-ra-pain-poem-video/

Enjoy.

Amazing relief

So, 1 Mar, I went to my rheum. I've been feeling wiped out and in more pain than I would ever admit. My family knows if I admit ANY pain, than I'm above my threshold.

I talked to her about the pain I had, how it started nearly 5 weeks ago with the RA pain, and within the past week to 2 weeks, my skin started feeling as if someone was taking thin, sharp needles and running them along my legs. I also told her my depression was coming back and it has been 7 months since I've been on an antidepressant or fibrmyalgia medication.

She didn't change my Methotrexate or the Sulfazine. We added Cymbalta to the mix and I received a steroid shot. I think all the weight lifted off my shoulders after seeing her, because I was utterly exhausted. I got home and took my first Cymbalta. I figured between the shot and the Cymbalta, I'd feel relief in a couple days.

Well, the pain, for the most part, was down 90% by 2 Mar. I swore I was imagining things. I was still sleepy, because for some reason, with the steroid shots (only my 2nd), my brain goes on overdrive, no matter how exhausted I am. So, every time I needed to turn over, I ended up tweeting in my dreams. *rolls eyes*

The night of 2 Mar, instead of tweeting, every time I woke up, I was singing a new country song in my head, so I guess I was a DJ of sort.

Yesterday, I walked slow, but I wasn't in intense pain, only little stabs of pain here and there, and my skin...doesn't scream at me anymore.

Who would have thought I could feel decent? I hate being dependent on medications to feel well, happy, etc. But, I think I learned my lesson. When my next flare decides to rear it's ugly head, I will be calling the doctor to see what she can do to help, because feeling this way is just...awesome.

I did, however, forget to ask a few questions. I need to remember to write these things down.

OH! So, I did the RAFit Kit survey online to get a "customized" workout. I wish I had asked my rheum in December, because she would have told me what I learned the other day. The exercises were NOT tailored at all for me. And when I told her about it, we both said at the same time, "It was just to get me information about a biologic."

Well, time to get on with the rest of my day.

Something new to me

So, Saturday night, I picked up my daughter's new book Vampire Diaries and began reading it. I just wanted to check out the writing style, etc. I looked at my finger holding the book open, both hands, and they were dark. In the absence of light in the room (the light behind me in the kitchen was on) it looked like they were black.

I went into a panic. I've never seen my fingers turn purple before. From my 2nd knuckle to my finger tips were deep purple (even after the light was turned on) on all 10 fingers, all the way around them. Between the 2nd and 3rd knuckles, they were starting to change colors.

Oddly enough, they were very cold too. But, my hands have been cold before and not turned colors. My husband looked at them and just held them for a few minutes. I bundled them in a blanket for about 20-30 minutes and then looked at them. They were still slightly purple, but not cold anymore. About 1 hr after that, the normal flesh color had returned to my hands and finger tips.

I had looked at my feet/toes during this, and they were not affected with the same thing.

Looking at them today, I notice that one of the veins he looked at and asked if it was normal, is not as prominent.