“Head to Toe” – A layperson’s Guide to the Signs and Symptoms of PMR/GCA; and the Possible Side Effects of High Dose Steroids

head to toe

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.

That’s okay.

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)    

head and shoulder

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:

  1. 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).
  2. Tenderness (I say tenderness it was pain!) in each of the temple areas of my head.  It actually hurt to “touch” my temples!
  3. 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?
  4. 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!
  5. 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.
  6. 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.
  7. 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?
  8. The range of movement in my neck was and still is noticeably reduced.  Makes driving tricky and definitely no footy or rugby for me!
  9. 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)  

body 1 (1)

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.

  1. 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.
  2. 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.
  3.   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.
  4. Stiff elbows?  You know you have stiff elbows, when you can’t extend your arm out straight!

Torso (and miscellaneous other areas)

torso

“Excuse me…  Is there an elephant sitting on my chest?”

  1. 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.
  2.  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!
  3. 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.
  4. 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.
  5. 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)

glutes 1

I literally have a pain in my butt!

  1. 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. .
  2. 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.
  3. 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)

legs1

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.

  1. 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.
  2.  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.
  3. 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.
  4.   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

mind

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.

  1. Indigestion
  2. Brain fog
  3. Extreme fatigue
  4. Lack of appetite
  5. Dry skin
  6. Inability to focus/concentrate
  7. Constipation
  8. Bloating
  9. Blurry vision
  10. Hand and leg cramps
  11. Stuffed nose
  12. Short tempered
  13. Confusion
  14. Feelings of isolation
  15. Diarrhoea
  16. Runny nose
  17. Vulnerability
  18. Unwanted facial hair (Is there any other kind?) 
  19. Insomnia
  20. Dry, split nails
  21. Back fat (nice!)
  22. Constant dry cough
  23. Thinned skinned (literally)
  24. Easily bruised
  25. Breathlessness
  26. Loss of vocabulary
  27. Lethargy
  28. Moon Face
  29. Low grade temperature
  30. Lack of stamina
  31. Memory issues
  32. Overwhelming sadness (sometimes)
  33. Dry, cracked fingertips
  34. 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.

We must somehow learn to graciously accept what is being given to us and try to understand the lesson the Universe is trying to teach us.

Namaste

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16 thoughts on ““Head to Toe” – A layperson’s Guide to the Signs and Symptoms of PMR/GCA; and the Possible Side Effects of High Dose Steroids

  1. What can a reader say that makes a difference?? Pretty detailed description and quite body encompassing. It sounds ‘lonely’ in that its you alone that is feeling all of these symptoms. I do often wonder about Nick and what a spouse might go through, knowing they can’t take the pain away or make it better. Does he feel lonely too. I believe your ability to cope, your ability to incorporate and live your life in spite of it will come…and is coming. What a jolt to everything you had planned in your own heart and mind for your future. There’s more I want to say but not necessary because you know. I’m way over here…but you are as much in my mind as if you were standing right in front of me. I will say that magnesium is an important mineral we all need but taking too much can cause messy bathroom issues. Been there, done that. I had to cut way back. Keep writing about everything…it is an outlet you need and you have a gift! PS…any news on your creative submission with the ‘head’??

    Liked by 1 person

    1. Thank you! Yes, “it” is taking it’s toll on both of us… There is nothing he can do, and he hates that. “It” has impacted our lives as I can’t go, do, see, experience, etc. I get wicked exhausted just walking into town… so “our” lives are now limited. It is what it is and yes it is isolating and lonely, but “it” has put me in touch with me and a creative side I didn’t know I had. (Apparently you did though!) My “Head” did not win or get a mention, but the competition was AMAZING! Check it out…

      https://www.facebook.com/brushbrighton/

      Love you thanks for your continued support!!!! xxxxx

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  2. Thank you so much for that. I described most of my symptoms to my specialist and was talked over and my report resulted in him projecting his thoughts about what was happening rather than what was really happening to me. Especially the base of the skull pain. He put that down to osteo arthritis. I think it’s PMR. If it was osteo arthritis it would still be there but it stopped with the Steroids. I’ve tapered from 50 to 9mg in in the last 4 months.

    Liked by 1 person

    1. Cut off in my prime. I wish you all the best in your recovery. And you’re right, you gotta laugh if not we’d cry. I feel so much better than at the beginning. Fatigue is still a problem for me though.

      I’d like to share your version far and wide.

      Liked by 1 person

      1. Share away Maria! If you’d like to see future posts, please feel free to Follow my blog… there should be a Follow button someplace.

        Best of luck to you on your journey.. we both have a long road ahead of us, but this too shall pass. Thank you for your kind words.

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    2. I am so sorry to hear your Doctor talked over you… but not surprised! They want so badly to tell us what’s ailing us!!!!!If they would just listen! I have GCA and PMR… the pains in the head, neck and shoulder are usually attributed to GCA, but how s/he came up with the Arthritis on the spot like like, I have no idea?

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    3. at this moment i am not liking doctors very much. in fact for many months i have not liked them very much. now…i guess i can give them (some of them) a bit of a break..many have not even ever seen a patient with these things. but..well i wwant a doctor who is at least kind and compassionate and who can fix this. there is no fixing i guess. so hope for remission. i love your blog and i apologize for me adding negativity. you are helping me immensely. Xxxx

      Liked by 1 person

      1. No, do not apologise! I am pro-negativity! I think we all need to recognise and embrace our negative feelings…we need to acknowledge them in order to work through them, and get past them. All this fake , positivity , does not allow you to work through the stages of grief and loss… and anyone with either or both of these diseases is experiencing grief and loss! Embrace your negative feeling, yell at the top of your lungs… I HATE THIS DISEASE AND I. MAD AS HELL! And then we deal with what we were given and we move forward. Xxxx

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  3. Wow, so much worse than mine. PMR first, no caratoid GCA problem but mine in femoral arteries so makes walking difficult. difficult to diagnose GCA in peripheral arteries so undiagnosed too long. Permanent damage to femoral arteries in legs. On treatment programme now and with daily walking, which in itself is not easy I may avoid by-pass surgery to my legs. Good luck with your journey. Love the humor.

    Liked by 1 person

    1. Wow! You have had a rough time of it, haven’t you??? I will keep you in my thought and pray that you don’t need the bi-pass surgery!!!! Best of luck to you and thanks for taking the time to read my ranting! Cheers!

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      1. im doint something wrong and when i try to ..comment i get sent back to login page it wont take my email add. its ok i dont want you to spend time on this i wanted to let you know sometimes a glitch i do want you to know that i am so grateful my eyes are letting me focus/read rightnow and i cant tell you how graeful i am to have found your blog. i have not ever looked at a blog before. i think i found you on the fb gca page but im not sure. you are gifted and are giving so many hope. you responded to me so kindly when i apologized for my negative words. i truly do not know why i am so lucky to have my vision and my life. i am truthful when i say i look around at so much suffering in the world and i afeel ashamed. i wish i had the gift of positive thinking 100 percent. i dont do well at it. pred has taken the pain that i asked God to pls take me. i am going to have to taper down and am afraid. i do know i have changed…i truly know that we dont just have this day we have this moment. People have appeared in my life ..that seem to be a supernatural thing..no not spooky i cant explain. i am not religious well sorrt of i dont know i am spiritual but i dont know.. but people are for sure appearing in my life in very unusual ways..related to GCA etc. so i AM praying..if there is God (I pray usually to Our Blessed Mother and of course dont know if that is real but it is very strong with me)…I have been praying “God, Blessed Mother, I dont know why you are placing these people in my life. I dont know what it is I am supposed to do. Maybe I am to pass on the things I am learning? If you are telling me, please tell me louder because I am not getting the message.” YES I know anyone reading this may say well this woman has lost her mind for sure. Indeed maybe so – my emotions are goofy to say the least…but I am very serious about what I just wrote and am pretty sure these are way too many words for a blog. thank you for alll you are doing for so many of us.

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      2. You have most definitely NOT lost your mind! I believe people are placed in our lives at the exact right moment and for a articular purpose… You found my blog, because your were supposed to find it. I write it because A.) it helps me out of my depression and negativism and B.) I’m supposed to write it, so that you can read it! A lot of what you describe is called Synchronicity… for example, my real name is Mar, because my Dad prayed to the Virgin Mary for a girl… I disliked the name my whole life and used my middle name (Melissa). I didn’t get it until my Dad died and I realised what an honour it was to be named after the Holy Mother. I have a tattoo that is the symbol for the Latin words “Under the protection of Mary.” …because I am! Don’t beat yourself for thinking negatively!!! It’s a process… you need to get through the negative in order to get to the positive. If you read all my blog posts (since GCA) you will see I go through dark times too.. it is natural and normal. Embrace the negativity, just don’t let it pull you under! Thank you for your support and write again anytime!

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  4. Thanks for posting the blog link on the PMR Support group on FB. I have been dealing with this pain that you so eloquently describe for 5 months and still do not have a definitive diagnosis. Thank you for sharing your feelings and journey, it is supportive to know that there are others who understand and share their coping mechanisms with others. God bless you and may healing happen for you and all those suffering from this disease.

    Liked by 1 person

    1. WoW! Thank you Denise, Thank you so much! I am so sorry they have not officially diagnosed you! How frustrating for you! Your words validate me as much as my word validate you, so thank you! And YES, may healing happen for all those suffering with PMR & GCA!

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  5. Amazing, your ability —talent, really— to so clearly articulate what it is to have PMR/GCA.

    I’m feeling so many emotions. I hear and see myself in much of what you describe, yet remain undiagnosed. I think one has to experience severe symptoms that “scream” PMR and/or GCA. Otherwise, vagueness can be chalked up to “getting old” by a GP and other practitioners. A few years ago, I sat in my doctor’s office and said very strongly “SOMETHING IS WRONG WITH ME.” Because, at the time, my blood tests were normal (though he hadn’t ordered the right ones), he offered me a sedative drug! I was incredulous. Thank god my husband was there to hear it with his own ears. I continued to get worse, and no one was putting the pieces together. Funny enough, it was my eye doc who referred me to a Rheumatologist, because of my chronic dry eyes, corneal abrasions, and small spot on my retina.

    So here I am three plus years later— though it probably has been going on longer than that— waiting and wondering what my future holds.

    I’m am grateful for your openess. And the openess of others who take time to share and comment. So many strong fighters out there!

    Stay strong ❤️

    Liked by 1 person

    1. Dear Claire, I am so sorry to hear that you’ve been on this roller coaster for over 3 years! I cannot imagine! I remember how disappointed and frustrated I was when A&E told me my debilitating headache/temple pain was a migraine (after GP said it was GCA!) and sent me home! So you have a Rheumy… are you still undiagnosed? Are you on Pred? I have so many questions…. What is the plan, for you?

      I am happy my “rants” resonate” with you, although it would be great to know that you have/or don’t have PMR/GCA! Thank you so very much for reading and for your very kind words.

      And yes, the way the medical professionals treat “women of a certain age,” is disgraceful… You probably read that I had most like had PMR for 18+ months, but it went undiagnosed because my GP thought all my aches and pains were normal, for a “woman of my age.” Had he diagnosed it as PMR, back then, I most likely would never had gotten GCA!

      I wish you the best of luck and hope they find out whet it is you’re dealing with soon! If it is PMR/GCA, it’s not the end of the world. It sucks, but it’s manageable. I am only 6 months in, but in the beginning I NEVER thought I’d make it this far.

      We adjust and go on… don’t we?

      All the best, Melissa

      Like

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