Category Archives: Polymyalgia Rheumtatica

I’ve been diagnosed . . . this is my story . . .

A new day . . . a new diagnosis

I have to wonder if anyone really ever reads this stuff.  Fortunately, I just like to vent and this is a good place to do it.

So . . . today I went to the specialist. A Rheumatologist. I guess I expected too much.

He’s not sure I have polymyalgia rheumatica. Since I went on a cruise in January. He wants to test me for MALARIA. Even though I had NO symptoms until at least a month later, and none of those symptoms are even remotely related to the symptoms I’ve explored for Malaria.

Next . . . let’s test for Hep C. Again . . . the symptoms don’t really match up, and I’ve never been exposed.

He’s also looking at Lyme Disease. The most probably of the three; however, I contracted it in February . . . in the middle of the coldest month of the year. Pretty sure there were no ticks in my back yard as I walked across it in my boots and ear muffs.

Why would he search for another disease?  Because I’m too young for this one. Most people don’t get it for at least another five years.  Obviously he has no idea how good I am at breaking through the statistics.

And when I asked, “Will the Vitamin C I take for my seasonal allergies compete with the Prednisone?” (Since Prednisone suppresses the immune system and Vitamin C ramps it up). His answer was a confident, “I don’t know. I’ll have to look that one up.” And he didn’t look it up while I was there, so I still have no answer.

I feel frustrated . . . like I wasted $60, half a tank of gas and half a day of my life.

I’m going to go back one more time to see if he’s any better the second time around, but so far I’m not impressed.

He did give a little more advice on the Prednisone dosage, so I’m hoping that’s better.

Other than that . . . it was a bust!

More on the Polymyalgia Rheumatica

Just in case you subscribed to my blog to keep up with this crazy disease, let me share a bit.

Tonight I’m writing because I’m miserable. I need to vent, and I hate to talk about it to folks around me. I know they care, but they can’t do anything about it, so why do they want to hear.

At the beginning of July I had managed to work myself down to 10 mg of Prednisone once every other day. I was so excited! I thought maybe it was due to being in the sun more often. Those first two weeks of July were so nice I was in the pool almost every day. Some told me it was probably the exercise, but I don’t really swim. I do get a little workout when we play pool volleyball, but other than that it’s mostly floating around.

The beginning of July was also my Muscle Biopsy, used to make sure I don’t have close sister to Polymyalgia Rheumatica, Polymyositis. The biopsy was every bit as wonderful as it sounds; however, I was able to walk normal by the next day. After they stuck me with an awl seven times and removed seven pieces of deep thigh muscle, the test came back negative, I have no muscle deterioration, so it is Poymyalgia Rheumatica.

As July moved on, the Summer got rainier, so I can’t get out as much. By the end of July I’m back to 10 mg every day. But now, mid-August, that’s not kicking it. I just took the second 10 mg for this 24 hours. It should kick in by midnight so I start to feel better, but right now my eyes hurt, my hips hurt, my shoulders ache and I feel miserable. My throat is sore too, but I can’t tell if that’s due to the disease or I’m getting some kind of throaty thing . . . so I upped the Vitamin C just in case.

I hate to complain. I know so many folks have it worse, and the pain I have tonight is still NOTHING compared to what it was like when I was first diagnosed, but it’s hard for me to concentrate and create.  I just don’t feel like myself.

I’ve spent a lot of time in prayer, and I will always ask for a healing .  . . not because I expect God to do whatever I ask, but because I know He is able . . . I know for a fact my Savior can. So why wouldn’t I ask. If He says, “No,” I’ll wait to find out how He’s going to make this into a Romans 8:28 thing. Until then your prayers are appreciated, and I’m just grateful there is a med I can take to make the pain go away!

Pain

I’ve been told I’m a bit philosophical . . . and I guess that’s a true statement. I’ve also decided that I’ve finally lived enough years and seen enough to have some opinions that may be worth listening to. For the last half hour or so I’ve been contemplating pain.

Perhaps you’ve read another post in my blog, and you know I have this autoimmune disease called Polymyalgia Rheumatica (at least that’s what the docs believe it is – I still have a bit more testing to go through). Whatever it is, it causes pain and muscle weakness. My shoulders ache, I have to lift my legs with my hands to get into my car. It seems to effect my throat and my eyes, and it makes me tired.

So, today as I was folding clothes with my shoulders starting to burn, I thought about pain in general. And it occurred to me that everyone has pain. Some is physical, some emotional. There’s psychological pain and even phantom pain. Many would like to think their pain is worse than another’s, but after watching many people who I know live in pain, and then living it myself, I believe that it’s not so much the degree of pain as the permission one gives the pain to control life.

Yes, pain can be debilitating. However, I know folks who’ve had and have pain, crippling pain (yes, literally crippling). But it never stopped them. I didn’t think too much about it when I was ten and watched my grandmother’s body turn on itself. I saw the physical effects the pain had on her body, the twisted fingers and the fragile bones. She never stopped, and she never complained. I was ten. I assumed it wasn’t that bad. In fact during the sixteen years I was privileged to know her before she died, I don’t know if I ever realized she had pain.  And in the past 50+ years I’ve met many like her, people whose pain caused visible disability yet were never stopped by it.

On the other hand I’ve also known people who every ache was a complaint. The pain was/is disabling. Their life completely stops because of the pain. I can’t say whether it’s worse pain than my grandmother and others like her have experienced. Even if these people sat next to my grandmother, there’s no way to know which pain is the worst . . . except perhaps a SED rate . . . that might be an interesting test.

What I do know is the pain for this second group of people has more power. And after years of watching people, I’m inclined to believe it’s power granted by the one who suffers.

Everything I’ve ever heard or read from a medical professional says that those who quit moving because of the pain will experience more pain. And more pain means even less movement for these folks. And this is my experience as well.

Those who dwell on the pain, those who allow the pain to be in control become more and more controlled by the pain. Those who refuse to stop because of the pain, still have pain, but it seems more bearable.

This is not to say we don’t need medicine for the pain. Whether it’s physical, emotional, psychological or other, often we need help. And there should never be any shame in doing everything we can to make it better. But God has created us with a great capacity to heal, and much of that healing seems to be taking authority over the pain. To not allow it to control us anymore than it needs to. (and even that will be different person to person)

There’s no way for me to tell if you are allowing your pain to control you more than it should. However, I have determined that those who talk about their pain more seem to be the ones who give the pain more power.

So in my situation, you’ll probably hear me talk about my pain from time to time because it hurts and I don’t like it. However, if you hear me say I can’t do something because of the pain, go ahead and question me . . . ask me if the activity will make it worse . . . ask me if I want to give the pain the authority to control me . . . because I intend to control my life even when I can’t control the pain.

 

More about the Polymyalgia Rheumatica

So, after really thinking about this “condition,” I’m starting to wonder if it started years ago. The TIA I had in 2016 could have triggered it I suppose, although the things that are making me wonder about when it started didn’t appear till 2013.

That was the year I started gaining weight. My doctor attributed it to my age and slowing metabolism, but I started gaining a pound a month. I finally started eating more protein and complex carbs and got it under control, but I still haven’t lost those pesky pounds.

It was the next Summer I noticed my hips started hurting.  I didn’t even tell the docs about this one! I assumed it was because I’m over 50. They didn’t really hurt that bad. It was a little difficult to put pants on some days, but never horrible. I remember the date because in 2013 I walked all night for our Relay for Life Team, but that year I couldn’t.  I had to take a lot of breaks.

It was the next year I noticed my hands didn’t work the way I wanted them to from time to time.  It was most evident in my handwriting. I really like the way I write, and I just didn’t seem to have the control I’d always had. I had a little bit of numbness now and then, but no pain really. So, again, I never told a doctor.

Right around Easter of 2016 I had a horrific bout with what seemed to be sciatica. It was excruciating! I went to a chiropractor, had some x-rays taken and got some exercises from a Physical Therapist. This seriously may have just been a problem with my sciatic nerve but now I have to wonder.

It was that same year that my stomach felt funny a lot and my shoulders began to hurt a bit. Neither was anything I considered to be major. I attributed them to my age. But the shoulders especially may have been the beginning of all this.

By the end of the year, I felt exhausted all of the time. My brain was in a fog a lot. I even told my neurologist and PCP. Both thought I needed to exercise more (and I probably do)

The most disconcerting thing is that I got till I have problems singing. My throat feels tight and weak all the time. The ENT gave me Flonase and said some of it was caused by Acid Reflux, but even after taking care of those two problems, I can’t count on my voice to be strong.

Finally, last fall, I remember thinking if I don’t figure out a way to exercise my eyelids, I’m going to have to have surgery to keep them open. I attributed it to being tired all the time, but now I have to wonder, are my eyelids heavy because I’m tired or do I feel tired because the muscles in my eyelids are effected.

I still have no idea how much of this is related to the way I feel now, but I think some of this is more than coincidence.

I and an EMG (Electro Myography) this week. It looks like all of my nerves are working OK. I see Doc in June to get the results . . . until then . . .

Polymyalgia Rheumatica – I’d never heard of it before

Yesterday I got confirmation that the pain I had for about a month has a name, Polymyalgia Rheumatica. It’s an auto-immune disease. Which basically means no one can figure out why your body turned on you all of a sudden.

Mine started February 21, 2018 . . . or perhaps a few years ago, and that’s the day it got real, but I’ll explain that more later.

I woke up that Wednesday sore. I’d bowled on Sunday and moved furniture on Monday and Tuesday, so there was a chance it was just overused muscles. I ignored it and didn’t worry about it too much. But then my right trapezius (shoulder) started feeling as though someone was ripping it in two.  Ibuprofen didn’t touch it.

So finally on March 17 I went to the doctor about it. She gave me some pain meds and muscle relaxers, but it just kept getting worse. By March 24 I couldn’t climb stairs and getting in my hubby’s 4×4 truck was next to impossible.  So, back to the doctor the next Monday.

I can’t begin to tell you how bad the pain was. From my neck to my knees every muscle ached, and just got progressively worse. I got weaker and weaker. It was hard to get out of a chair, and getting in and out of the vehicle was torturous. During the whole ordeal I was painting and decorating, getting our new church building ready for Easter. So it didn’t stop me, but it did slow me down and it was excruciating (although not as bad as the Sciatica pain I had a couple of years ago).

My maternal grandmother died of Lupus and grandpa of Colagen disease, both auto-immune diseases. Five others in my family have Rheumatoid Arthritis. So, I was starting to get a bit concerned. And after blood tests and two days on Prednisone, the diagnosis was confirmed. I’ve joined the auto immune club in the family.

I couldn’t believe how fast the Prednisone worked. In less than 24 hours I went from not being able to roll over in bed to being up early and feeling great! However, enough of my family has been on this miracle drug to know there are a lot of reasons NOT to stay on it. I got a bit worried Saturday because I forgot to take it in the morning, and by afternoon, I could feel the symptoms coming back.

I’m not sure where this will go, but I do know there isn’t much information about it, so I thought I’d chronicle my journey.  So stop back often, leave a question or two and journey with me.