Lots of questions

I'm sorry if I'm getting on everyone nerves with all my questions but as this is still all new to me I want to know as much as I can. My drs are brilliant explaining everything in detail but it not the same as living with it daily and what better people to ask than someone who is actually going through it cause everyone symptoms are different but all suffer with the same thing and know the best way to deal with it or what works for them xx

[123mossie]

No you definitely won’t be getting on anyone’s nerves at all, the forum is for asking & no one minds. It’s reassuring to know others have similar issues & it’s so helpful to realise you’re not alone with problems.

[Hidden in reply to 123mossie]

Thank you

[SheffieldJane]

Ask away! Remember that every question you ask is likely to chime a bell with somebody else.

[Hidden in reply to SheffieldJane]

Thank you

[SheffieldJane in reply to Hidden]

Karen, you haven’t given much information about your condition. Eg is it PMR? How long have you had it? What dose of Pred are you on?Headaches can mean GCA. We need more information to answer your very relevant questions.

[Hidden in reply to SheffieldJane]

Not had it long on day 9 of pred been in pain about 6 months started off with just aches which I put down to post menopausal but then got to the stage where even the water when having a shower would have me near enough in tears through pain. Also for me it got a lot worse worse like overnight it was so quick to get really bad. Headaches just been last few days even with painkillers it doesn't seem to go completely. My neck it quiet painful today and headache worse so maybe neck pain is causing headaches

[PMRpro Ambassador in reply to Hidden]

Please don't ignore that headache - PMR does sometimes progress to GCA and even if you think it may be tension, please get medical advice asap, especially if pain killers do nothing. It is too late when vision has been lost.

[SheffieldJane in reply to Hidden]

Honestly Karen, listen to PMRPro, she really knows what she’s talking about. X

[Linlang]

Now 4 1/2 years since diagnosis.Worse symptoms for me were pre diabetes resolved by reduction of pred and diet changes.Gastric problems 2 endoscopies - first revealed cell changes but second ruled out treatment need.

Hypertension and extra tablet - slow release felodopine after 1 yr gave n

Me overnight tree trunk ankles.

Vaginal lump told might be cancer 3 days before Xmas and doctor would see me again for referral when she returned after 3 weeks leave! I found this unacceptable and complained to practice manager.

Steroids are great for pain relief but do need careful monitoring and some of the side effects- depression - change of personality - aggression. Are grim.

[PMRpro Ambassador in reply to Linlang]

What happened to the 2 week referrals for query cancer?

[Linlang in reply to PMRpro]

Quite- I went for private consultation. The surgeon agreed needed investigation but was going back to Africa for her mother’s funeral... didn’t suggest a colleague do the procedure..... eventually done and nad thank fully.these docs - I worked at kev11 where the royals go and find some nhs rules/ behaviour unacceptable!

[Hidden in reply to Linlang]

Dont know where u are but I'm in wales and when I had smear lumps were found within 3 wks had camera scan pre op and op to remove them. Thankfully they weren't anything serious but was grateful everything happened quickly. I would have questioned 2 wk rule if things hadn't moved as quick as they did. Hope everything goes well for u

[Linlang in reply to Hidden]

Hertfordshire and I have hospital work as a radiographer was furious and went out and crashed car,!

[Hidden in reply to Linlang]

Omg.

[Pr0jection]

It's great that you're posting about your issues because other people may have the same but are too worried about asking.

[Coffeebeans]

All questions are good. I have found out so much from other members asking stuff I wouldn't have thought of.

Things such as low carb diet, timing of meds, enteric coated or plain tablets, all-sorts really and they've all helped me.

[alvertta]

There are no stupid questions. Ask away. This group is The Best.