The ‘F’ Word

All posts in the The ‘F’ Word category

Pain Begets Pain & an Internist is the Way to Go

Published July 28, 2017 by amusingamore

Friends, 

It’s been a diffiSpoonie Super Powercult couple of weeks for me. I’ve had a migraine that will not go away…it comes and goes at different intensities, but it’s never gone. It makes living with Fibromyalgia even harder – as we Spoonies know, pain brings even more pain.

 

I decided last year to change my general physician. My reasons weren’t because of poor service, etc. It was more like…there’s a lot more going on than the ‘reason’ you’re putting down in the system on why I’m here. You’re never seeing the whole picture. That’s why I chose to find an Internist.

An Internist is not an intern. An Internist actually goes to school longer to learn how to diagnose adults. Yes…their specialty is to dig deeper and not just treat the symptoms, but find the real cause and see the big picture.

I found a very smart, patient, empathetic, brilliant Internist. (Please feel free to email me at fabulouspoet@gmail.com for the name of this doctor. Note:  This doctor is in Connecticut.) My Internist is thinking holistically and at the same time, knows too much at once will overwhelm me. She explains why she thinks a certain medication or treatment may or may not help my situation. She tells me a couple of times when she has a feeling I did’t process what she said and she writes it down for me – – Fibro Fog Fantastic! Folks…she spends TIME with me. How many of you can say that your doctor dedicates as long as it takes to treat you when you visit?

migraine-memeTurning to my latest life altering ailment, my migraine. My Internist sent me to a headache center (I didn’t know these existed until now.) The APRN that’s treating me is called a ‘Headache Specialist’ – I have to admit the first time I heard this term, I thought it was cheesy and I was ready to turn and run thinking it was some kind of clinic they sent people to when they had no idea how to get rid of a persistent migraine. I was wrong.

My first visit lasted about an hour with the APRN (this is not counting the short wait time in the dimly lit waiting room (thank goodness for dim lighting!) She asked me a lot of questions and my speech was not the best, but she was very patient. After looking though the records sent her way and having me do a few neuro-physical things like holding my arms out and pushing and pulling against her, walking toe-to-toe, etc., she mentioned a fever with my migraine is unusual, unless there’s something autoimmune to go with it. She requested I get my ANA and double-strand DNA checked again (in process).

needleShe also suggested that I get injections in my scalp – to start. Okay….now I’m thinking WTF!!!!!!! I have an exacerbated reaction to injections (I literally feel like an injection is a steak knife and sometimes bleed afterward). I was very concerned. Was this woman crazy?!?!

After gathering myself together, I explained my reaction to injections. She listened patiently then mentioned a shot of Toradol in my gluteus maximus with the warning Toradol would not provide the same level of relief as the injections in my scalp. Toradol was used as an add-on to the scalp injections as support for pain. Somehow she talked me into scalp injections.

I’m not going to lie folks – it was painful! I felt every millimeter of the needle and when she started injecting the serum, there was a searing pain that sent me straight to yelling “Owwwwww” and crying. I felt embarrassed but was more pissed off that the injection hurt even more than I was imagining. She pulled the needle out, reached for some tissue, told me it was going to be okay. I eventually stopped sobbing. I looked over at her as I was wiping my eyes and asked, “Are you done?”

400-04232429She looked at me surprised, held the needle up and said, “I barely got in a third of the medicine.”  To lighten the moment, I mumbled, “This is definitely a four letter word day.” She giggled and asked if I wanted her to continue. I had to take ten seconds before I responded with something that would upset the both of us, and I agreed to continue. I was willing to endure this torture for the end game:  relief.

Repeat the insert of the needle, me screaming and crying and her pulling the needle out two more times on the left and two times on the right. It was quite the experience for both of us.

1492__208x140_lion-cub-lewa-wildlife-conservancyAfter about a day and a half, the shots in my scalp relieved my migraines by about 40%, about 40% of the time. It was still hanging around like a lion waiting to jump on its prey. Still living in dimly lit rooms, avoiding the sun like a vampire, and miserable with my fibromyalgia pain.

Second visit about 4 days later, she mentioned the scalp shots again. We looked eye-to-eye for a moment, like two gunfighters in a duel…looneytunesdueling

The air suddenly got very thick and my throat tightened. I tried to hide the tears on their way, but before one tear dropped, she said, “maybe next visit”. Let’s do the Toradol shot. I won…I think.

So, here we are, one day after the shot and my butt is sore but I do feel some tension relief. I can still feel that lion moving around…me and that lion are going to have to have a talk…seriously!

 

 

 

 

 

What the ‘F’?

Published July 6, 2017 by amusingamore

I know it’s been a while folks…my bad. I will catch everyone up at a later date….for now, this video does a good job of explaining what Fibromyalgia really is, its history, etc. It’s long. I’d say start 30 minutes in. (P.S. can you believe that my spell-check is telling me Fibromyalgia isn’t a word?!?!?!?!?!!!!)

All I need is mascara and coffee…

Published September 3, 2016 by amusingamore

It’s what’s on a bag I recently purchased, one of those bags that hang in front of the registers at T J Maxx. Love it. 

Today I am living by that saying, as I did yesterday and the day before. I have hives again. No where on my body where I can hide them ~ smack on my face. When I get hives, I feel especially run down. More than the average fibromyalgia day. 

Just tapering off of steroids after adding plaquenil to my morning and evening meds. A few weeks on prednisone and I blew up … Puffy face, etc. Now I have to contemplate if I take them again for the hives. That’s what the doc prescribes for me when I have hives. For the record, I like prednisone only because I can walk better and do a little more, but I do not like the weight gain one bit. 

Decisions, decisions. 

So, mascara and coffee here I come. Let’s do this. 

It’s amazing, confusing, frustrating, scary.

Published August 2, 2016 by amusingamore

Fibromyalgia stole my life…at first, a little at a time. Looking back, I can now see the symptoms, sometimes years apart, appear and disappear.

About six years ago, when visiting my brother with pancreatic cancer, I had to get out of the house for a while. My brother needed rest and he felt like he had to entertain me. He didn’t of course, but I told him I’d make plans and would not be back until late, and to not worry about me – just rest.

I called my very good friend and we made plans to go to an old hangout for a few drinks and a little dancing. It was perfect. I got to give my brother a break, got to see my friend, and got to let my hair down. I loved my brother – he was my best friend, and although I was oldest, he was my older brother in how we treated each other. His situation was rough on me too…I was losing what I’d considered my only ‘real’ family.

The night out was perfect. I drank, I danced, I laughed! By the time I got back to the house and in the shower, I began to feel a fatigue in my legs I’d never felt before. I actually giggled to myself thinking it had been too long since having so much fun and thought a good night’s rest would cure it. I drank a bottle of water and laid down for the night.

2 pm the following day, my brother’s wife knocked on the bedroom door. I thought it was much earlier, maybe 7 am – I didn’t think it was so late and it felt like I hadn’t slept all night.

My sister-in-law peeked in and asked if I was ok. I sat up in the bed and asked if my brother was up. She said he was and has been waiting for me to get up. I smiled, thinking how endearing my brother could be. He was excited I was there, despite how awful his life was turning out.

I told her I’d be there in a few minutes.

I had a hard time moving my legs to the side of the bed and the skin on top of my legs were on fire and itching at the same time. I pulled the covers back and OMG! My thighs were swollen 3x their normal size and the skin on the top of my thighs looked paper thin and as if the skin was about to split open.

Now the pain. My brain had registered what was going on…something very very wrong.

I ended up in the nearest ER…and, as what I now see as the usual, they could not explain what was happening. I ended up on pain pills and in bed the rest of my visit. I made sure I spent as much of my bed time snuggled next to my brother, sometimes holding him while he cried. He was in bad shape at times and wouldn’t let anyone hear of it from him, but I knew. We talked for hours, watched his favorite shows, but most of all, we both had to rest but made the best of it.

Looking back now, I know it’s one of the first major episodes of fibromyalgia – or whatever doctors can’t figure out what I have.

Just one example of my symptoms before I was positive something was seriously ‘wrong’ with me.

Changing the subject a bit, away from my precious brother who’s now passed, I turn your attention to me, this week.

With fibromyalgia, bursitis pain in the shoulders is common. Two years ago, it was in my shoulders and hips. It was the worst right before my Fibro diagnosis. I’ve battled it on and off since then, and recently I had a minor flare with my shoulders. I got through it of course and shrugged it off the best I could. Worse things were going on in my body (more on that another time).

Last Sunday night I’d woke up from a sound sleep with the worst burning, searing pain in my right shoulder. I shot up out of bed and tried to move it around and discovered I would not raise my arm very high without excruciating pain. Not good. I put my ever-ready heating pad on my shoulder, laid flat on my back, and hoped the heat would mask my pain long enough to get back to sleep.

No go. The pain was so bad…no position or heat helped. I actually felt better standing up so my arm could hang down. So there I was in the middle of the night, writhing in pain, unable to lay down, pacing around my bedroom in pain.

I was up all night tossing the idea of an ER visit around and talked myself out of it a few times, rationalizing that I could go to minor emergency in the morning. At about 6 am I said HELL NO! I NEED RELIEF! I drove myself to the emergency room.

Bottom line to that visit: x-Ray, no broken bones, a sling, pain RX, and a referral to an ortho doctor.

I researched the ortho doc (of course) and he is well known in his field, and appears was married because his marriage announcement (came up in Google search) was in the New York Times. I admit it…I read it..I was a little jealous. He is good looking! I digress.

When he walked in, he introduced himself and asked questions then did a very quick ‘raise your arms’ examination. Very quick.

He is convinced I have Adhesive capsulitis of shoulder (Also known as frozen shoulder).

Basically, between my diabetes and the possibility of me having something autoimmune (it’s an ongoing investigation because no one knows what I have), I likely have scar tissue just randomly growing in my shoulder, limiting the pathway for the muscles and tendons in my shoulder from free motion. Let me tell you – this pain sucks!

6-8 weeks of anti-inflammatory meds and pain pills and physical therapy 2xs a week. If all of that is unsuccessful, I’d go under general anesthesia and the doc would move my arm in ways that would hopefully break up the adhesions. If that isn’t successful, surgery to remove adhesions is next.

Adhesions. Yeah. I know those. I have abdominal adhesions from multiple endometriosis surgeries (years ago). Adhesions account for ten of the last 15 years of my pain. Hell yeah I know adhesions. Again, I digress.

So, yet one more thing to deal with. God bless pain medication.

https://en.m.wikipedia.org/wiki/Adhesive_capsulitis_of_shoulder

REPOSTED: Sharing Another’s Good Thoughts

Published July 18, 2016 by amusingamore

If someone you love has been diagnosed with fibromyalgia, you might feel helpless, but you don’t have to be. Friends play an essential role in helping those who live with a chronic illness. It’s important that people with fibromyalgia feel truly cared about and that they are not forgotten, many people with this invisible illness […]

via How To Support A Friend With Fibromyalgia — Claire’s comfy corner