cleared my head!

earthspirit

i would just like to apologise if i have said things in too direct a manner on here. when i signed up a week or so ago it was during a period of great stress - i was in a pathetic mess. totally related to side effects of meds, which also gave me total depression in a way i have never felt in my life.

anyhow this isnt a post about whats wrong with me, but as an explanation for why i might have sounded harsh - long before now i have spoken to many health professionals and bombarded them with questions about RA - during which i said i realised that there was little public interest and a lot of flimsy information given out by some health professionals who did not know what RA was either. i found that quite shocking.

anyhow the doctors and other medical people referred me here, stating that it was an incredibly open forum where all aspects of the disease were discussed in depth. i may have bluncdered in, with my drug befuddled head and immediately starting talking about the disease and all its very nasty parts, things which i accept some people do not want to read or hear, with some viewing it as scaremongering.

ive been on internet forums since 1998 and some of them are very scientific some a bit too intellectual for me, but i read them with great interest. i am also on other RA forums where the debate is very indepth and so i suppose i made assumptions about this one, based on what the medical people told me.

if you have a disease, it really has got to be in your own best interest to know as much as you possibly can, so you can ask the doctors the right questions and secure the best possible treatment for your individual disease.

i have looked on the website and 1 item that was mentioned in a couple of posts was the specific excercises, well i cant find them so help with this would be appreciated and the second is the medical informationi about the diseases - somewhere there are medical links and scientific data ?

elnafinn

Hi earthspirit

If you go to Publications & Resources at the top of the page you may find what you are looking for.

Here are a couple of links in that section:

http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle

http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Rheumatoidarthritis

If you phone the helplines they will be happy to send you any information they have that may be of interest to you if you cannot find it to download in Publications & Resources.

Elna x

frogmorton

Hi Earthspirit

Good to hear you have 'cleared your head' and sussed out the unwritten etiquette on here

This IS a fantastic forum....the support for each other is second to none so you have found the right place. I am in agreement that it is good to be informed about your own form of arthritis. Each form has it's own issues and on here there is no hierarchy - which is considered 'worse' or 'better' to have. We accept that they are all painful.

This is where I first came and probably read every one of the AC leaflets :? I felt and still feel it safer to avoid trawling the net and getting sometimes misleading or frightening information.

I see our Elna has already given you some links, which I know will help (after all she was the person who helped ME first when l arrived here ).

What l will say is that folks on here are pretty much the most tolerant and understanding, and I am sure will accept your apology wholeheartedly. We are all in pain sadly and need to stick together

Love

Toni xx

vwkamper

Hi,

We all have bad days and at the end of the day forum's are a good way to let off steam, sometimes our med's turn us into different people and for me my pain factors have a lot to do with the way i talk to people sometimes.

Luckily they know i'm not well so it helps.

And if your on here then we know what your facing everyday.

Hope you feel a bit better lexy.

stickywicket

I probably replied in ‘too direct a manner’ too, earthspirit. There are people on here in various stages of disease and, although I firmly believe that knowledge is power, it is very easy to overwhelm and frighten people – especially newly diagnosed people - with too much knowledge which is inappropriate for them.

Your own disease has presented in a most unusual way and I can see that the sudden downturn must be extremely disconcerting and very stressful. However, we are very good at supporting others here. I know I’ve benefitted a great deal and I’m pretty sure everyone else has too.

bubbadog

earthspirit, We all have bad days and rant sometimes, don't feel you have to appologies, I have read some of your posts and what you wrote seemed fine to me. As vwkamper said our meds and pain turn us into different people. So don't feel you need to appologies for being yourself!

valval

hi we try not to scare new people posting as we all differ in how we react to the arthritis and also the medication we often pm if it something we do not want others to read if it might scare others yes we read and help each other and the information at top of page very good with more rummy's giving better meds earlier the damage many suffer should be slowed so why would we scare new people with what might be years and years away. many people have very bad days and then post what might come across not quite as we mean it but most of us understand and try to help each other when this happens please keep posting as we all need as much information as possible to cope with what we all face val

earthspirit

thanks all for your posts.

before i had dx i considered myself quite clued up on many medical matters, health & wellbeing. i did not know the extreme effects of RA & i had not considered that the the disease itself could become more "potent" due to the side effects of some meds.

ive since met many people with RA in person and amazed at how little many of them knew about their own condition, despite havaing had it dx for years.

so many people had ops that havent worked out very well and they have struggled for a long time with quite serious diabilitites but havent lost the weight that would have helped a bit and others who have damaged liver etc by taking meds and continuing to drink alcohol.

my own real issue was the severe weight loss and having no muscle tone and its taken me an awful lot of digging to find out much info about this. im spoken to lots of people who are trying to lose weight and who had not even considered the muscle mass they might be losing unseen as they were still overweight. this in turn leads to loss of mobility in many cases and the harder it is to excercise well and gain strength and they feel more tired etc as a result of having flabby muscles, as much as the active RA itself.

there is much to learn about our diseases we have eh?