'You look well' - invisible illness - how to respond when you feel ghastly?

shykins

clarry i was on the morphine patches but they made me so ill i was almost in A&E as a result.

madget i am unable to tolerate NSAIDs (dicoflenac made me very sick), most painkillers and 'triptyline and 'pentine medicines. the consultant at the pain clinics comment was "well what do we do now!!" umm i dunno thats why i come to u aargh

zephyr i definitely get what u are saying as i dont tell people either and hate to be self piyting but i guess at the moment i am due to the pain levels.

slap me someone i need to snap out of it!!

meritaten

can I ask if you have been referred to a Pain Control Clinic? I hadn't heard about these until my sis suffered chronic pain and she researched and found one IN our area. our GP was most annoyed, as although he knew about them, he didn't like them as the prescriptions were expensive and coming out of HIS budget! but, it worked for my sis. Her pain is now mostly under control and her life is getting back to normal.
(they may have different titles in different areas - so if Pain Control Clinic doesn't bring up any, try Pain Relief Unit, Chronic Pain Control Clinic etc. )

madget_2

shykins wrote: »

clarry i was on the morphine patches but they made me so ill i was almost in A&E as a result.

madget i am unable to tolerate NSAIDs (dicoflenac made me very sick), most painkillers and 'triptyline and 'pentine medicines. the consultant at the pain clinics comment was "well what do we do now!!" umm i dunno thats why i come to u aargh

zephyr i definitely get what u are saying as i dont tell people either and hate to be self piyting but i guess at the moment i am due to the pain levels.

slap me someone i need to snap out of it!!

Shykins - Was it actually a doc at a pain management clinic who told you that? If so, no wonder you're feeling down! Blimey!


I wonder if it might be possible for you to be referred elsewhere for a second opinion. I know from experience how disheartening it can be when you feel as though they've given up on you, but another consultant be able to suggest different options and give you some hope.


As I said, I don't know whether something like anti-TNFs (or maybe even anti-cytokines) work for your particular conditions, but it doesn't sound as though they've tried it out for you yet. Maybe worth asking about them?

shykins

meritaten i am under the pain clinic at the hospital not sure if what you suggested is the same. thanks i will go do some googling

madget yes he was the consultant there, i did ask to see someone else and have just received the appnt October!! not bad when this has been going on since february. not heard of the 2 drugs you mention so will look into them thanks

Morglin

*~Zephyr~* wrote: »

But if they don't know about your illness, why would they as "how are you doing?"?

I suffer from pernicious anemia, rheumatoid arthritis and chronic IBS. All problems that have few outward signs, but all conditions that make me feel wretched.

My close friends and family obviously know about my problems and they do tend to ask me how I am doing. But when I bump into someone I haven't seen for a long time, who knows nothing of my conditions, and they say I look well I am generally thrilled to hear it! I spend so much of my time feeling like death on a cracker that to be told I do actually, still look human is quite a boost!

I don't then tend to tell them exactly how I am feeling, because that just brings everyone down and doesn't achieve anything expect making me a martyr, which I can't stand.

I think that when our conditins are particularly troublesome we are in danger of becoming as wretched as we feel. We can become too self-absorbed and self-pitying. And, while we all have the absolute right to wallow and play woe-is-me every so often, it's not really good for us to do that very often. Sometimes, we should just take the compliment with a smile and enjoy it. It's good for the soul

Yeah, I'm with you, and if people ask how I am doing, I just say 'fine, thanks', as I see little point in keep talking about it all!

Lin

*~Zephyr~*

shykins wrote: »

meritaten i am under the pain clinic at the hospital not sure if what you suggested is the same. thanks i will go do some googling

An accquaintence of mine with fibromyalgia went to a sort of retreat last year which was design to help you learn how to live with pain. It was residential and lasted just under a week, but she got a lot from it. She was certainly more positive afterwards.