Jan58's Status Updates

Hi Latoya
Thank you for your kind message, I don’t know what is happening in the NHs but someone I know said she is having similar from a heart nurse not replying to her as so busy but I haven’t seen him the rheumatologist for over a year just a nightmare, no o should t be doing the chasing they should get back to me I changed to this hospital as was getting the run around from that one but two is the limit here I can’t change again,
Care doesn’t seem be happening your left to your own devices I am afraid.
Yes my doctor he has a sugury 9am 1pm on a Saturday and Sunday it’s out of ours so will try then I let you know.
Yes I really hope so cross fingers.
I will do take care
Jan

I hate you're experiencing the runaround like this and with no resolve either. Waiting on calls that never come and having to keep chasing people shouldn’t be part of getting care. I don’t blame you for going back to your doctor, sometimes that’s the fastest way to actually get things moving again. Trust that instinct and keep pushing for answers. I really hope you’re able to get through to someone soon and get this properly looked at. Continue to keep us updated! -Latoya (Team Member)

Hi Latoya
Yes I have seen a doctor but he thinks it’s tennis elbow but I don’t use it much and gave me exercises but haven’t helped much and I can’t use anything on it as hurts too much so just painkillers and exercises,I was supposed to get a phone call from rheumatologist last Monday but he didn’t get the call and since then I rang rheumatologist helpline left messages said someone will be back in touch but no one has so making another appointment at my doctor which is easier then trying to talk to a rheumatologist who I haven’t seen face to face in over a year.
It’s mad here in the uk, no proper support at all.
I think it’s AS related.
Will let you know if I ever get through to anyone.
Take care
Jan

Hi there, ! While you wait on others to share their experience, I will say that some people with AS can sometimes develop joint or tendon issues due to inflammation or overuse so this isn't uncommon. Since it’s been getting worse since last September, you might want to have a doctor or PT check it out. They can see if it’s tennis elbow, AS-related, or something else, and suggest ways to help with the pain and get your elbow moving again. I hope you gain answers and some resolve soon! -Latoya (Team Member)

Oh no, I’m really sorry you’re going through this again. It must be incredibly frustrating, especially after already dealing with a flare in May. Constant pain from your middle back to your neck and lower back can make even the simplest things feel impossible, so it’s completely understandable to feel overwhelmed and worn out. And trying to manage all of this with a heat pad while the weather’s already so warm? That’s rough. I wish there were an easier fix. Have you been able to try a cold pack to give your body a break from the heat? Or maybe a lukewarm bath if that’s more manageable? I really hope things start to ease up for you soon. Hang in there, you’re doing the best you can. -Latoya (Team Member)

Hello latoya spasms again started 15th July I can’t be in a flare up from May and now July, I had spasms again 15th/16/17th July but now no spasms but pain across middle back, higher back to my neck and lower back.
Having heatpad on but it’s hot in the uk so I am sweating with it, i am struggling to do anything .

I can really feel how much this is weighing on you, especially not being able to do the things you love or even simple tasks like picking up a kettle. I know it’s not just physically painful, it’s mentally exhausting too. I really hope your body starts settling down soon and that some gentle movement gives you even a little relief. Be kind to yourself while you’re in this 💙 All the best, Latoya (Team Member)

Hello latoya
Thank you so much for your message, it is very frustrating and annoying and stressful and it affects my mental health, what I try and do and love I cant do.
The spasms have eventually gone but I don’t know if I am still in a flare without the spasms as I have pain on reaching stretching for things and it’s at the top of my back.
I live in the uk and the weather here is supposed to be summer but it’s chilly and cold.
I will try do some stretching but before this flare just picking up a kettle I could do now and other things but I can’t and I try but it cracks my back,I just want it to go before I had the flare but it’s not and it’s two weeks now and I didn’t before have this as bad with other flares my husband is having to do more things to help.
Thank you very much for the article I appreciate that.
Thanks so much for replying.
Take care
Jan

Oh no, I’m so sorry you’re going through this. It sounds absolutely awful. I can imagine how frustrating it must be to feel good enough to do something you love like gardening, only to end up in this much pain after. What you're experiencing does sound like a flare, especially with the spasms and not being able to sleep. It’s great that you’ve got a heat pad and TENS machine. Maybe try alternating heat with gentle stretching (if you can manage it) just to keep things from locking up more. I want to also share with you an article this offers a few more ideas that you might find helpful as you try to manage the pain. You can access it there- https://axialspondyloarthritis.net/living/build-your-own-flare-toolkit. Hoping things ease up for you soon and that you’re able to get some rest. You’re not alone in this 🩵 -Latoya (Team Member)