First, let me start by saying, I am by no means a PMR/GCA “expert.”
There are many people who have had one (or both) of these rheumatic conditions, for a lot longer than I have; and have dealt with and managed their symptoms and side effects more effectively and courageously.
However, for a PMR/GCA “Newbie,” this blog post might prove to be a helpful (and humorous) look at what you MIGHT encounter on your journey.
And, please know, this is very much YOUR journey!
If I have learned anything in the past four months (124 days, 7 hours and approx 36 minutes) it is that PMR & GCA are NOT one size fits all!
They manifest in (and affect) each of us, quite differently. There are, of course some very standard signs and symptoms, but there are also some very unique, individual oddities that cannot be discounted or just shrugged off as not being important.
Here, in this amateur, lighthearted, but hopefully relevant Guide (and I use that term loosely!) you will find some symptoms of PMR and GCA, side effects of being on high dose steroids, steroid withdrawal symptoms, along with some of the other physical, mental, and emotional manifestations that I encountered on my journey, thus far.
It is often impossible for me to differentiate a disease symptom, from a steroid side effect, from a steroid withdrawal symptom, from a non-related PMR/GCA ache or pain… I guess what I’m trying to say, is that I cannot tell you, what’s what. All I know is that I feel like crap most of the time and just have to deal with it.
My Rheumatologist struggles to separate “what’s what” as well! She believes, that after my being on high doses of steroids for 4 months, I’m experiencing some of steroid’s worst side effects. And since I have also been “actively” tapering down (I’m down from 80 mg to 50 mg), she says I’m suffering from steroid withdrawal too! Oh, I almost forgot… it has also been suggested (by another Rheumatologist) that my body is actually resistant to steroids!!!! So, ain’t that a bitch!
Some of what I write may resonate with you… much of it may not.
What’s important is that you are made aware of the many possibilities that you may encounter on your journey.
“Knowing Is Half the Battle.” ~ G.I. Joe
Head (neck and shoulders)
Ahhhhh, the head! My journey began with a diagnosis of GCA, in November 2017, so my head was my primary complaint.
My immediate symptoms included:
- A sudden and intense, bilateral headache (more painful on the left side, than on the right) This lasted for 19 days (and 18 horrible nights).
- Tenderness (I say tenderness it was pain!) in each of the temple areas of my head. It actually hurt to “touch” my temples!
- Sharp, stabbing pains all over my head, that would come and go. On the left.. on the right… in the back… behind my eyes. Ouch!!!! WTF?
- Excruciating pain, where the bottom of my skull met with my neck/spine. It hurt more when I tried to look up; the pain became crippling!
- Bilateral pain in my neck! Literally a pain in the neck! It was like a bad strain or muscle ache; it felt like I had overdone it, with some heavy lifting. It started just below my ears and radiated down into the tops of my shoulders.
- I also noticed my eyes weren’t focusing as quickly as they normally did; when I removed my reading glasses, it would take few moments for my eyes to adjust and focus.
- Since the initial onset, I sometimes have had difficulties lifting my arms, as my shoulders are just too weak! What’s up with that? I can hear my brain telling my shoulders to lift my arms; and my shoulders recognise the command, but they just don’t have the strength to lift the arms! How weird is that?
- The range of movement in my neck was and still is noticeably reduced. Makes driving tricky and definitely no footy or rugby for me!
- My tinnitus became much more noticeable and bothersome after the initial “headache from hell” began. It’s always there and occasionally plays up and becomes even more annoying than usual.
Upper Back (and arms)
In the 19 days, between the sudden onset of the headache and me actually going to the GP… (Yes, I realise that was stupid, but in my defense, I did visit my Osteopath, three times! He was sure he understood the problem and could fix it. Not!) I developed odd aches and pains in my back and arms.
- I developed a “heaviness” between my shoulder blades. Not a pain per say, but a heavy, achy feeling across the top of my back. I still get it today; it’s an annoying ache that radiates into the shoulders and down into the upper arms.
- My arms felt like thick, heavy lead pipes, that have been screwed into my rigid shoulders, and tightened into place with rusty screws. Simple tasks like lifting grocery bags and changing the sheets was (and sometimes till is) impossible for me.
- In the beginning, my triceps ached, all the time. It felt like I had over-exercised them at the gym… I wish. Now that ache comes only occasionally, and when it does, it stops me from doing simple household chores.
- Stiff elbows? You know you have stiff elbows, when you can’t extend your arm out straight!
Torso (and miscellaneous other areas)
“Excuse me… Is there an elephant sitting on my chest?”
- There’s a “heaviness” across my chest, as well as my back. This ache feels like “pressure,” like there’s an elephant stepping on my chest! The ache goes from shoulder to shoulder, across my collar bones. It’s feels like I’m having difficulty breathing, although I don’t really think I really am.
- Heart palpitations are fun, right? Noooooooo! Especially if you have a Mitral Valve Prolapse (MVP) and already take a Beta Blocker to control the palpitations. I can be sitting on the couch, relaxing, watching TV and my heart starts doing the Cha Cha Cha, in double time!
- Not in the torso area, but I have a weird taste in my mouth, all the time… No matter how much mouth wash I use or how many times a day I brush my teeth, I have an odd (not pleasant) taste in my mouth!! Yuck.
- My teeth ache! Not just one or two teeth and not all at the same time… but at some point within the last 4 months, each one of my teeth has HURT like hell!!!! I have been to the dentist twice and x-rays say there is no problem with any of my teeth, so it is more than likely nerve pain; perhaps from reduced blood flow, but nobody is 100% sure.
- My hands (not even close to my torso, sorry!) get cramps so badly that they actually become DEFORMED. The muscle, in the hand, under the baby finger, collapses into the side of the palm; pushing the baby finger and ring finger out away from the other fingers. It also causes them to bend into the palm, like Dupuytren’s Contracture. Very attractive!
Hips (buttocks and hamstrings)
I literally have a pain in my butt!
- My buttocks ache. It’s usually one side or the other , thank goodness it’s usually not both at once! However, I must say, it hurts like hell and it’s annoying. I have difficulty walking when this particular pain kicks in and I feel like I’m 100 years old. .
- The pain in my butt, actually radiates down into my hamstrings… and it feels like “sciatica” (if you’re old enough to know what that pain feels like) It feels like nerve pain, but with muscle ache twist.
- My hips get tight and stiff. It’s hard to walk and it makes getting up off the couch almost impossible without assistance. (Yeah, that’s fun, having to ask your husband, who is 10 years younger than you, to help you get up from the couch! Not awkward at all!)
Thighs (calves and feet)
I was diagnosed with GCA first, but it has been agreed by two Rheumy’s and a GP, that I have probably had PMR for at least 24+ months prior to the GCA diagnosis. Unfortunately, the PMR went undiagnosed because, my GP at the time, did not “connect the dots,” and believed that I was experiencing normal aches, pains, stiffness and malaise associated with “women of a certain age.” Needless to say, he is no longer my GP.
- My thighs ache relentlessly. I realised, after the PMR diagnoses, that my thighs have ached for years! The pain usually started at the end of the day, when I sat down to relax, my thighs would ache. It still happened today, just not as often.
- I get cramps in my calves. They hurt, but they are not the same as the “deforming” cramps that I get in my hands, thank goodness! A warm bath usually resolves them and I have recently started taking Magnesium, which is said to help.
- My feet get stiff and numb. Not numb like when they’re cold… more of a warm, tingling, numb feeling. I can feel them, but they just feel weird and tingly.
- My legs, in general, sometimes feel like large, tree trunks. They’re heavy, rigid, and feel like they’re swollen twice their normal size. They’re not of course, but that’s what it feels like. I shuffle around, dragging them along, like The Hunchback of Notre-Dame. Maybe a slight exaggeration, but only slight.
Other Physical, Mental and Emotional Impacts
The list of physical, mental and emotional symptoms grows everyday… the symptoms come and go. However, I never really know what’s related to the auto-immune diseases, the steroids, and/or the withdrawal from the steroids! And of course, there’s always a possibly that whatever I am experiencing is actually fueled by my lack of physical activity, lack of social interaction, isolation, depression, anxiety, etc, etc, etc. and not actually related to any of the above!
Here is a list of the physical, mental and/or emotional symptoms I have experienced in the last four months. What has caused them specifically, I do not know… Some I still struggle with, while others are gone, at least for now.
- Brain fog
- Extreme fatigue
- Lack of appetite
- Dry skin
- Inability to focus/concentrate
- Blurry vision
- Hand and leg cramps
- Stuffed nose
- Short tempered
- Feelings of isolation
- Runny nose
- Unwanted facial hair (Is there any other kind?)
- Dry, split nails
- Back fat (nice!)
- Constant dry cough
- Thinned skinned (literally)
- Easily bruised
- Loss of vocabulary
- Moon Face
- Low grade temperature
- Lack of stamina
- Memory issues
- Overwhelming sadness (sometimes)
- Dry, cracked fingertips
- Lack of interest in most everything…
I could go on, but I won’t… it’s too depressing!
Don’t despair… this too shall pass!
We will get through this! Remember these diseases are thought to “run their course,” within a few years to several years. And some people will be lucky and get through it in even less time! Yeah, sure, many of us will be dependant on corticosteroids for several years, but hey, it could be worse right? And it’s a helluva lot better than the alternative.
Look, there’s no getting around it, having PMR and/or GCA sucks big time! It does!!!
And having both together is just a cruel and insidious, ruse of nature! …but the stress we create by trying to fight an impossible, invisible battle, only weakens us further and make matters worse! We need to stop fighting and start accepting.