Update from Kiwi sufferer.

[Kiwisufferer2019]

Well I have had a few bumps in the road along the way. After all the headaches, and ruling out GCA with a specialized artery scan by a different Rheumatologist, who specializes in ultrasound of temporal arteries, the two of them agreed my headaches were just migraines. Upped my amithriptyline to 20mg a night as a preventative. Pleased to say headaches much less frequent. They requested I have a brain mri to rule out any surprises. 10 days ago my Rheumatologist rang me to give me the results. He first asked me if I'd ever had a stroke or symptoms of a stroke. I said no never, we'll he sad the mri shows you have had a stroke probably some time ago, some blood showing they don't know whether that is recent or old. He then told me if I developed any symptoms to get straight to hospital. That gave me quite a fright as you can imagine. Until 4 years ago when I developed PMR, I'd always been pretty fit and healthy. I saw my GP last Thursday and she said the blood wasn't a clot but a small brain bleed. I'm to go to a neurologist, but can't get an appointment for 4 months. In the meantime I've got the StJohns Ambulance coming next Wednesday to arrange an alarm that I can wear at home being by myself I thought that was the most sensible thing to do. I have also had a very bad back for the past 3 weeks, comletely my own fault, while my pred was doubled to 20mg when they thought I had GCA I dug a new garden around my deck extension, felt so good! Then tapered back to 10mg and wham! Back kicked in, soft tissue damage I'm sure, very painful, anyway on the mend now. Sorry for the long ramble, I've been feeling a bit down not being able to do anything I even had to use a walking stick the first few days it was bad. So good to be able to walk nearly normally again. We've had some lovely fine days in this part of the country, so that makes one feel better. Before we know it Christmas will be here, can't say I'm looking forward to it this year, my first without my dear husband, still I am lucky to have my children and grandchildren. Thanks to thus forum I can get it all off my chest.

Janis

[Grammy80]

My goodness, you have every right to feel down and overwhelmed. I'm 83 now (Grammy 80 is a fib), and I had a stroke when I was 43. You certainly have a fantastic positive attitude...I'm happy you shared your feelings and concerns instead of carrying them inside. It is so wise to secure an alarm and know that if you need help, it is there.

I hope that back quiets down~~~no more digging in the dirt until you feel like yourself.

[Grammy80 in reply to Grammy80]

💞

[Kiwisufferer2019 in reply to Grammy80]

Thank you for your kind words Grammy 80/3 definitely no more digging any new gardens for me, I should've known better. I've only got a small garden now and very pleased with it, I've planted a lot of plants from. The farm, and bought a few new roses. I can't live without my flowers. I've also got a small vege garden, quite a change from the huge vege garden my husband and I had up until January this year. I'm missing our new potatoes which we grew every year. Best wishes to you for Christmas and 2024, may everyone enjoy better health. Janis

[Grammy80 in reply to Kiwisufferer2019]

Sounds so good, Janis....flowers, veggies!! I have a friend in Maine who treats herself to fresh flowers for her house...they are a lift. Marilyn 💞

[PMRpro Ambassador in reply to Kiwisufferer2019]

Have you ever grown potatoes in a pot/bucket? You'd almost certainly manage that.

homesandgardens.com/gardens...

[Kiwisufferer2019 in reply to PMRpro]

No I haven't, but the idea has crossed my mind. Thanks for that link PMRPRO. I may just give it a go.

[Kiwisufferer2019 in reply to Grammy80]

You were so young when you had a stroke, I'm so lucky mine didn't effect me in any way.

[Merryfield]

Janis, so sorry to hear about your husband’s passing. What a sad and stressful time. Pedicure? Shoulder massage? Let the family take over holiday decorating and cooking? Glad you can walk again. I understand that there are meds for people who have TIAs.

[Kiwisufferer2019 in reply to Merryfield]

Thank you Merryfield, I'm sure the neurologist will put me on something when I eventually get to see him. I've got a pedicure booked in 2 weeks time, so looking forward to that. My GPssid no blood thinners because it wasn't a clot, but a small brain bleed and blood thinners could start another bleed. It must have been a very small stroke but apparently there is something called a silent stroke, that has no symptoms. Just very lucky I would say!

[SheffieldJane]

How alarming to be told that you have had a small stroke. Quite common in our age group apparently. A stroke is what GCA is. I am glad they’ve cleared you for that. Your Christmas will be poignant and your dear husband will be there in spirit. Your bright attitude will see you through as always. The alarm idea is inspired.

[Kiwisufferer2019 in reply to SheffieldJane]

It's common sense and reassuring for the kids. As well as peace of mind for me. I don't won't to be that old lady that know one found for several days!🤭

[DorsetLady PMRGCAuk volunteer in reply to Kiwisufferer2019]

That’s always a thought when you live on your own -unfortunately .

[Stills in reply to DorsetLady]

If you stopped posting we’d know and all come knocking 😉

[Kiwisufferer2019 in reply to Stills]

🤣🤣🤣🤣🤣🤣🤣🤣🤣

[DorsetLady PMRGCAuk volunteer in reply to Stills]

That’s nice to know - not sure you’d get on the stagecoach with associated complaints though .. 😳

[Kiwisufferer2019 in reply to DorsetLady]

I couldn't lift my right leg high enough🤣🤣

[SheffieldJane in reply to Kiwisufferer2019]

You won’t be. 💞

[Kiwisufferer2019 in reply to SheffieldJane]

Thank you SheffiieldJsne.

[Kiwisufferer2019 in reply to SheffieldJane]

Thank you for your kind thoughts and words.

[DorsetLady PMRGCAuk volunteer]

HI Janis,

So sorry to hear of your recent problems, you have had such a difficult year, now this latest news .

If it was a silent stroke, and you had no adverse affects then it sounds as if you were one lucky lady, but nevertheless very worrying to hear, and although it can occur with GCA it is rare… and very sensible to get an alarm.

As said, hope you soon recover from your digging escapade… Pred does have a habit of making you feel like superwoman at times….and then kick you up the proverbial..🤨

Christmas will be difficult, the ‘first’ event of any kind always is, so sending virtual hugs 🤗🌸

[Kiwisufferer2019 in reply to DorsetLady]

Hi DorsettLady, I am indeed lucky, there are so many that are not so lucky, and not a clot, though that doesn't guarantee that there won't be another brain bleed I suppose , but I'm not going to think about that. Christmas will be very poignant , as we are going out to my youngest daughter's in the country where Ted and I spent last Christmas while Sarah went on a 5 day tramp in the deep south. We had a lovely 5 days out there even though I had covid, it was the week before Ted took a rapid downhill slide. He had helped Sarah plant all the native trees and fruit trees he'd grown for heraround her boundary and in her orchard, the year vefore when he was still in reasonable health. She bought the section off our dear friends, it was a part of their farm in the district Ted grew up in, so there are lots of memories if him there.

[DorsetLady PMRGCAuk volunteer in reply to Kiwisufferer2019]

Have a lovely , albeit a bit of a sad Christmas with your daughter - so many good memories of Ted there.. so let them come to the fore.

The trees and the love he put into planting them are a brilliant legacy of a great husband and father. 🌸

[Kiwisufferer2019 in reply to DorsetLady]

They certainly are wonderful memories, and my eldest daughter and husband and their two children and my son and wife and two little girls will all be there, so I'm lucky indeed to have them all not too far away, not like some of you ladies with children on the otherwise of the world. Our family Christmas is on Christmas eve, then Christmas morning I'll go to our sons for breakfast with them and see the children open their presents, if I'm up early enough!

[Croft9232]

You have a lovely positive attitude, keep it up hey. ,

You seem too to be getting great health care.

Are you living on the beautiful South Island? Had the privilege of holidaying there with my family who live in Australia in 2019.

Wishing you well ❣️

[Kiwisufferer2019 in reply to Croft9232]

Thank you for your kind words Croft9232, no I live in Pukekohe, South of Auckland. I've been to the beautiful south Island many times, we just love it. Magnificent scenery and pristine rivers and lakes.

[Miacaro45]

Reading your post brought back so many thoughts and memories about what you are going through which was and is similar to me. You are a strong and resilient woman and you will get through this period. I, too, got an alarm to wear which brings me some comfort. Please take care of YOU as you are very important. Sending virtual hugs and wishing you only the best.

[Kiwisufferer2019 in reply to Miacaro45]

Thank uou so much Miacsro45, so many people on this forum have been through so much in their journey with PMR and GCA and other trials, and the compassion and understanding everyone shows is very uplifting. So many of you have had it far worse than me, but still offer kind words of encouragement which are so helpful. I honestly don't know how I would've got through the last year plus if I hadn't found this forum. I don't post very often, but read everything that's posted and have learnt so much from all of you knowledgeable people. Thank you all so much. Janis

[TedTheMaineCoon]

Sorry for your loss last year ! I’m on my own , but have children & plenty of grandchildren. You are similar to me with Pmr and suspected GCA . Mine was migraines too . Sounds like you have a good rheumatologist! I’m not getting far with mine .

All the best

Lesley

[Kiwisufferer2019 in reply to TedTheMaineCoon]

Hi Lesley, I am very fortunate that I have found a very good rheumatologist, he is so thorough, and leaves nothing to chance. The first one wasn't so good. It helps a lot if you feel listened to. I only have to email him with a concern and he rings me fairly promptly. The migraines aren't as frequent since he upped my amithriptyline to 20mg every night. Good luck to you.

Janis

[TedTheMaineCoon in reply to Kiwisufferer2019]

Thank you Janis . Yes my rheumatologist just wants to send me to physio & thinks it’s rotator cuff ?? What in both sides for 2 years ?? And I’ve done nothing physical to cause rotator cuff . She said my ESR normal at 39 .

Oh well , I tend to send an email to Gp this week . Maybe ask 2 nd opinion from another trust !

[PMRpro Ambassador in reply to TedTheMaineCoon]

In what world is an ESR of 39 normal?

[Kiwisufferer2019 in reply to TedTheMaineCoon]

The only way to know it's rotary cuff is to have an ultrasound, which I had a couple of months ago to check out my shoulder pain(requested by Rheumy) it showed a tear in both shoulders, so I had a cortisone injection in each shoulder, but I couldn't remember doing anything to cause the injury. I would definitely seek a different opinion, that ESR is way above normal. Good luck, and don't let them fob you off. Janis

[TedTheMaineCoon in reply to Kiwisufferer2019]

Thanks Janus , I feel I’m being fobbed off .

[Gimme]

I am pleased that the rheumatologist is taking care of you and that you are also looking after your own wellbeing too. You may feel like you might have overdone it in the garden, but we all need joy in our lives and if it makes you happy, that's a good thing. Now you can relax and enjoy your work. One thing I learned on this journey, do whatever makes you happy.

[Kiwisufferer2019 in reply to Gimme]

Yes you are right, Gimme although I can say the past 4 weeks sitting on my couch with 2 wheatbags on my sore back, I wasn't ways feeling happy. I'm pretty sure it was soft tissue damage, and it is coming right now, but it's taught me a lesson. But golly the roses are growing and are just starting to flower, and that does bring me a lot of joy. The pain will fade.....🤭

[Gimme in reply to Kiwisufferer2019]

I hope you feel better soon and that the roses flourish. I made a similar mistake yesterday, but not nearly as bad as you. All I did was move some of my ceramic pots to the garage to store them out of the winter frost and this morning, I am having trouble lifting my arms, so I guess it will have to be an easy day. I am waiting for the pred to kick in to see if I can manage a swim, it's the one activity that I can do that never seems to cause me any pain. If my arms hurt too much later, I might go and just walk up and down the pool. I so love being in the water.