The Diary Of Onebrokelady Aged 60 And A Half

Onebrokelady

Sun_Addict said:

I’m so pleased you’re finally being taken seriously. Hopefully some treatment will be forthcoming. 

I had a terrible experience when my mom passed thanks to non family members trying to cheat me out of the very small amount of money she left. They made a very upsetting time more difficult than it should’ve been and I’ll never forgive them for that. 

Thank you 🙂I picked up my steroids today. Family are a pain in the backside aren’t they 

Cherryfudge

Could you investigate iron as an infusion? My DH had that and was suddenly bounding with energy!

It sounds as though that diary of symptoms could be invaluable as it's so difficult to keep track of the things that are part of everyday life.

Onebrokelady

Cherryfudge said:

Could you investigate iron as an infusion? My DH had that and was suddenly bounding with energy!

It sounds as though that diary of symptoms could be invaluable as it's so difficult to keep track of the things that are part of everyday life.

I’ve tried it before and was very sick after 😟

Onebrokelady

I went to the hospital today and had my bloods done. I have to wait for an appointment for the CT scan so will have to go back. I also picked up my steroids, iron and folic acid. I’m going to start taking them tomorrow morning because I have to take the steroids in the morning. It was a bit of a mission to get to the hospital because the snow still hadn’t melted on my steep hill that I have to walk down to get the bus. I have a Nordic walking pole here that DD1 left behind so I took that with me and it saved me a couple of times. I ended up walking down the middle of the road in the end because that was the only bit that wasn’t icy.

I also got the  after visit letter on mycare today and it seems the Rheumatologist has gone from one extreme to the other in diagnosing me with things. So he’s written that I have Polymyalgia along with ongoing Fibromyalgia and osteoarthritis in my shoulder and knees plus carpal tunnel syndrome in my wrists. He has recommend I wear a brace on my wrists overnight. I’m not sure about the caroal tunnel thing because I had nerve conduction tests for that a few years ago and they were normal. I thinking the problem with my wrists is just referred pain from my shoulders because of untreated Polymyalgia. It will be interesting to see if they improve. I will try the wrist splints anyway because they cant hurt. 

After the hospital I did a bit of shopping for emergency supplies for over the weekend so I don’t have to go out if the weather is horrible. So me and the cat are set up with treats 😀 and now I’m off to bed to read my book 

Suffolksue

q Delurking ( again ) when I had polymyalgia starting in 2014 ,the rheumatologist I saw said it wasn’t a race to get off steroids and the slower I went the better it would be .
i finally finished in 2019 - if I tried too quickly I had a relapse and at one point he was bringing them down by 1 mg/ every two months .
he also said that if I needed to remain on a small dose for life that was fine .

ive had no problems since ,so maybe a long slow reduction might be better .

hope you get a good improvement quickly ,it really is a very debilitating condition 

dawnybabes

My original only symptom of being coeliac was the lack of iron, it’s only when I started having the more normal symptoms that it suddenly made sense. 

You can buy gentle iron (my DH used to have this as he couldn’t tolerate the ‘normal’ iron.  

Cherryfudge

Goodness, everything is suddenly happening! Please don't go for an infusion if it makes you sick - I'd not realised it could do that. I hope the prescriptions you've collected today start to make you feel better soon.

The other treatment I'd seen mentioned was one of the new biologic drugs which are now being used in other conditions but I've no idea how much they've been trialled for yours. I'm only mentioning them because it's good that new lines of treatment are being explored.

Emergency supplies for the bad weather, then bed with a cat and a book sound ideal. You will be able to listen to the wind howling and lie there turning pages to your heart's content (until the cat wants to go out).

debtfreewannabe321

After the hospital I did a bit of shopping for emergency supplies for over the weekend so I don’t have to go out if the weather is horrible. So me and the cat are set up with treats 😀 and now I’m off to bed to read my book 

This sounds bliss to me 🤩 
So glad they got to the bottom of your ailments. I used to have iron deficiency but also used to be sick if I took the prescribed iron - I used to buy spatone which was really good. It's liquid and works better and quicker than tablet but the downside is you have to pay for it.

Have a lovely day 😁

Makingabobor2

iron used to make me constipated when I needed it. Horrible stuff.  Try liver and spinach, much nicer

Sunshine_girl2

Just catching up on your diary. Really pleased to hear you may finally have a correct diagnosis , and that the pain may lessen.