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)
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.
- Indigestion
- Brain fog
- Extreme fatigue
- Lack of appetite
- Dry skin
- Inability to focus/concentrate
- Constipation
- Bloating
- Blurry vision
- Hand and leg cramps
- Stuffed nose
- Short tempered
- Confusion
- Feelings of isolation
- Diarrhoea
- Runny nose
- Vulnerability
- Unwanted facial hair (Is there any other kind?)
- Insomnia
- Dry, split nails
- Back fat (nice!)
- Constant dry cough
- Thinned skinned (literally)
- Easily bruised
- Breathlessness
- Loss of vocabulary
- Lethargy
- 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.
rantings of a madwoman 
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’??
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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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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.
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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.
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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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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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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
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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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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.
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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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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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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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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.
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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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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 ❤️
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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
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this is by far the best easily understood related to PMR GCA reading research material I’ve seen. and over anything I’ve come across from anyone in a medical profession And any written material internet and otherwise. so glad to have found your blog is astonishing how closely I can relate and after near 10 yrs have never felt more confident, THAT IM NOT NUTS ALL IN MY HEAD as I’ve been told time and time again. I can’t thank u enough for sharing your story! Couple that with a new patient believing compassionate personable GP who clinically recognized pmr GCA trying pred with success so far..although in very initial stage of txt trial and very ill..you’ve both helped to provide inspiration and hope to move forward. best wishes to u your commenters followers on your struggles thru pain and journeys toward better health! as profound as this may come across, its…well I went from a H stay ystdy little better to crying in discomfort all night hopeless and ready to give up..so its it’s just that profound how much of an effect your info has had. was always one to say personal accounts can be the most valuable and I can’t wait to share this with my Dr. I have an aunt who always refers to health is wealth and set backs I’m sure but better ready to get rich. thank you from the bottom of my heart!
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Dear Robin, WOW! Thank you… thank you so much! I can’t tell you how pleased I am that you liked my blog post! I’m happy it resonates with you! Again WOW! I hope it helps you relay to your GP/Rheumy what you are experiencing. WE ARE NOT CRAZY and IT IS NOT ALL I OUR HEADS! If my GP had listened and put 2+ 2 together, he may have diagnosed PMR 2+ years ago and MAYBE I would not have gotten GCA! …but there ya go! I wish you well on your journey! I hope my blog posts continue to help you, entertain you and make you laugh! If we don’t laugh we’ll all cry! Thank you
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hello again so quickly..would love to see your posted body being numbers poster larger legible not able to magnify…any pointers or places to go for?
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Hmmmm? It is not mine.. I borrowed it try this link; maybe there are bigger images on Google Image https://www.google.co.uk/search?hl=en-GB&tbs=sbi:AMhZZiu0g1D6IWq96f3mcvlvm1Rh_1fauf_1RCLEF9BP5NfVGgSP7iN3CSlDPzUFwPx-4BB3JQv96Fi2sVXmM9tcbsmpPoDpMD3t6mHPBMu5R3aFNiQ0ENkjuSeqXYBJVbXXv2aDh4vbjBgXvVzPE7aLi9KBMua_1GBHNGpeLZZtZQqdknSMoWhZy18Lid-fFMZNBsLXxtL15c_1_1UB_1NihY3E-pQh_1fCyTJyOlVizR6jPfeDwgrJUhtiSTH7q-mvVUMokIS9QBZ3_18WjNWlBr9VIsV4x_1heRRIksu_1EmWVCKXm09t8r1iTD_1SVQmE124K9kD4N50ptQZMCL7hQOfSjYhZSxOHdWtwxKNA&ei=26e7W_2VMI_msAef8YTQCQ&start=10&sa=N&biw=1280&bih=672
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Just wondering how you’re doing? The last comments I saw were from Oct. 2018. I was diagnosed with PMR nearly a year ago. Put on 20 mg of steroids and immediately developed Cushings Syndrome. I look like a caricature of my former self. All fun activities have been sidelined. Have managed to get down to 6 mg but seem to be “stuck” there. I’m awaiting hip replacement surgery and lung surgery to investigate a nodule they found on my lung. I live in England and I am 70 years old. I want my health back ASAP so I’m doing everything I can to do this. My good days now outnumber my bad days and learning to cope, adjust and accept this hideous condition has been the biggest challenge. I’m still married to the same lovely guy (miracle!) despite it all. I was struck down in December with a virus that put me in bed for 6 weeks. Missed Christmas, New Year’s and all the fun of the holidays for the first time ever. I’ve spent time in a wheel chair and now use walking aides due to my hip which was most likely destroyed by the steroids. I have only blurry vision in my left eye which is being investigated. I’ve gone from a size 14 to a size 18. I can’t remember a day without pain. But I get up every morning. Dress, make the bed and do my housework. I walk 10,000 steps daily We’ve started dancing again and I play table tennis. I’ve learned how to cope with the pain without codeine for the most part though some days I’m glad I have the option. Weirdly I’ve developed warts all over my body including my face and the doctor says it’s a sign of a compromised immune system. Hopefully they’ll go away when I get off the steroids and my adrenal glands learn how to do the cha cha again. Hope your journey with PMR is over and you’re feeling good again.
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Wow! You’ve been through it haven’t you? I was diagnosed with GCA & PMR in 11/2017 and I have just reduced to 10mg, so you are doing better than me! Good job! The Pred is controlling all of my symptoms and I hope that will continue to be the case as I continue to decrease. Fingers crossed! The first year was horrific… but the past 6 months have been pretty good. Thank goodness. I had knee replacement surgery in Feb which set me back, but I am coming out of it now. Thank you for asking about my health; I hope you continue to get healthier and stronger and can get past the 6mm soon! Don’t worry about the weight or the bumps… my motto, “This too shall pass.” Best of luck!!!!
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