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Want to scream

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Guest CyberPixie

Asked my GP (PCP I think to those in US) to check my electrolytes. She rings my endo who says oh no, doesnt need to have potassium levels checked when you're on florinef, eh..hello?!!!! So why has upping my potassium got rid of some symptoms??!!!

I also asked my GP for some stronger painkillers because I've been on these ones for over 10yrs, they're hardly doing anything anymore and as I've reduced my steroids, my EDS has got SO much worse and I'm in so much pain and extreme stiffness, I feel like I've been beaten up. She said there's nothing stronger except Morphine and she wont give it to me. (Not that I want to be on Morphine)

Also, I told my endo that I wasnt getting any help with any of my illnesses and some were getting worse as a result of reducing the steroids. Yet again he misinterpreted what I meant and suggested I get psychiatrict help!!! ARGHHHHHHHHHHH!!!!

My GP has had a long letter from him and I can guess he's now saying it's all in my head and she wants to go over this letter with me. Well, tough. I'm not going to ring her and be told I need to see a psychiatrist.

I've had this my whole life, no one helps me at all. I've had to diagnose every illness I've got myself then find and literally BEG a Dr to see me to confirm if I have it or not (and I've always been correct with my diagnoses!)

I'm just being neglected.

Being bedbound I haven't had a smear (pap smear) for over 7yrs. All mine have been abnormal. Yet my GP refuses to do one at home (despite my old surgery doing it at home). It's just another example of how useless they are.

Plus I've woken up today feeling terrible, I didnt overdo it yesterday though so not sure why and I'm just fed up. Needed a rant!

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Would it be an idea to ring Prof Grhame's secretary, if you're really worried about the EDS being so much worse? What's made it worse? It's supposed to ease with age isn't it? I was quite miffedto discover that the one thing which helps EDS accoridng to him is weightloss- I'm a size 12 and he told me to lose 3 stone! WOuld it be worth thinking about shedding a few pounds (I have no idea what size you are- so please don't think I'm trying to be unpleasant!) so that there is less strain on the connective tissues and joints etc?

Also, could your Doc try you on Tramadol? That's a strong painkiller.

I have to say though, painkillers aren't always the answer with pain. I know that sounds daft- but this is something you seem to be discovering yourself with the painkillers you're taking. My mum attends a fibromyalgia clinic and a consultant told all the patients this week that test hae now proven that if they give people painkillers for FMS and then take the pain relief away, there's no difference. It's more of a placebo effect. The best thing to do for FMS according to these people is to warm up your joints- not as in applying heat, but as in moving about. THe longer you lie in bed, the stiffer they become. I know this is hrad- I do most of my work sitting up in bed as oit's easier on my legs- but there is some truth in it, I'm sure.

Last term I worked almost solely in bed and was SO sick, as you'll remember from my posts. This term I've been using a lovely ergonomic chair in the library and there has been such a difference- ijust in the act of moving to get to the library, not sitting in one position too long.

Failing all that, a lovely hot bubble bath helps my joints too!

I think your Doc may be right about the morphine- it is an evil drug and does terrible things to people. It's basically a legalised form of heroin, after all! And could well make the pots worse.

I know how you feel- I have had seriously unresponsive Doctors in the past- the best thing to do is not get mad but get EVEN! I ALWAYS end up saying "RIght- if you won't make me well, I'll just have to darn well do it MYSELF!" It's atravesty of justice that people like us have to do it,but like you've shown through finding your own diagnosis- as least you have the intellectual resources to think laterally and do it!

Hope you feel better soon

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I am going to go try to find a link to the american group AARP (for older folks). They are a great group and have a magazine and they put the articles up online. Several months ago they had an article about PAIN. Many Americans go around in chronic, severe pain. Either doctors don't want to medicate, or patients are afraid to ask for help, or doctors don't help, or doctors don't understand pain and under-medicate.

I have had a rough time with bad doctors as we all have BUT we all have a right not to be in pain. If your pain is SOOOOO severe that is changes your quality of life and you unable to function and get everyday tasks done because your pain is so severe-you need something done. There is a difference in needing the pain meds to be able to function and needing them to "take pain away". Not sure if I am explaining this well.

Chronic pain folks need the pain med to just be able to get out of bed, etc. It's not a case of wanting them to take feelings away and not cope. Difference of real pain verse an addict. Please read the article on pain.

There are ALOT of options available. If your pain is fibro, you would likely respond to a different sort of pain meds that might not be as heavy as others. Can you get to a pain clinic? If you could go to a good one of those that works through options of physical therapy, meditation and than goes to meds or uses them in combo would likely be good for you. That way you are doing things to positively help your body, movement, and hopefully reduce pain. Than you can take something if you need to.

I have severe pain and it is being treated. I get a little annoyed when I hear about the "Placebo" effect, because I know that is not what is going on with my body or many others with the same disease. That might be true for folks with fibro, but it is not the case for all. Doctors hear placebo, and they are likely going to want to do even less than they already are.

More and more, I am seeing a lack of research and a want of the medical profession to learn more about dysautonomia, lyme disease, pain, etc. Instead they make rash judgements and don't pursue more research and really find out what is going on. Not true of all but it is so for most doctors. Lots more research needs to be done!


Above is a link to the aricle "Prisoners of Pain" from the September/October 2005 issue.

They have some other articles about using massage, acupuncture, etc. for pain control.

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