O.K. so you as someone with a degree in health education jumps on this group and decided someone was trying to do your job. I spent 7 years working in Physical Therapy (as an assistant, would never overstate my education). When I was diagnosed with this disease my family doctor said I should just keep taking NSAID's, no referral to rheumy or any scheduled follow up. It was some 3 years before I began getting treatment, many of which i could not tolerate after years of taking NSAID's destroyed my liver. The people on this site have given me more valuable information, from the experiences they have had with the disease, than any of the 8 or so physicians I have seen.
Please go back to teaching health class, if you do not have the disease, no degree will let you understand what these people are going through. This is a support group and we come here for support, that we generally don't get from people who are in the health care profession. Shame on you for trying to take that from us.
I am sorry to all on this board if this sound a little overboard, but people like this are only part of the problem.
I have PsA & a MPH. It is NOT just a “vocational masters degree” or whatever tntlamb, but i like a lot of your posts so im not going to take it personal. fyi, i have yet teach any teenager about condoms. i do help many patients like myself learn about managing pain and many other serious diseases. but this is not about the degree, its about what this person said and i do not agree with her. Like everyone here has said, this community is about support and sharing our advice or experiences is what helps us all. no one is forced to follow any advice anyway so this warning is not necessary.
It was a Joke, sorry...... You ought to hear the jokes about JD (the only masters degree that poses as a doctorate)
A vocational masters degree BTW is one that finally qualifys you to do something. A business administration degree for example is a "do you want fries with that" degree. Once you go to business school, you might get something beyond a mid-management position in a mall store
A support group is a place where people have some common ground that ties them together and helps them cope. You are correct. To get diagnosed and prescribed, you need a professional. To get support, get a group of people who know what you are going through. Have you noticed how an ad must note that they paid to endorse, but a testimonial ad does not need it? That's the power of sharing experiences. You are comparing apples and oranges. They are both beneficial, yet none substitute the other.
I have a psychiatrist because of my level of pain. He got glad I was in this support group. It has helped me more than opiates have. When we are weak, unity makes us strong. I pray you get from it as much as I get, if you have PsA.
I just want to reiterate that no doctor or dietician has done anything but make me worse for the past 20 years apart from the few maverick thinkers that I have found on the internet. I have seriously studied the most up to date controversies about diet and auto immune disorders and have made myself well during the past 6 months. No one is going to give me any more immune suppressants or NSAIDs ever again because I can control the inflammatory responses in my body extremely well by diet. If there are long term health effects they are unlikely to be as bad as the ones caused by using biological immune suppressants that require a disclaimer to be signed. I say that health is your individual responsibilty and only you can tell if you are feeling well or feeling crap. I own that. I am quite looking forward to the next challenge of sharing this with several newspapers and NHS trusts. There are a lot of vested interests out there but my vested interest, the one I feel most passionate about , is my health and wellbeing so I can support my family. so - long live the debate about diet and auto immune disorders.
dani7865 said:
I would have to say that I don't think ANYONE here is trying to give out medical advice, rather they are trying to share with others their knowledge of this disease with others. I have found many people on this board to be exceptional (lamb you are definitely one, many thanks for that) in sharing their knowledge and also in directing us to other research reports or web sites which may be useful to us. We need to make sure that we, as the ones who are stuck with this disease, we find out as much as we can about it, as even though we may go to specialists, etc., alot of them will not give you a whole lot of time, or explanation about your illness, or other related conditions...some of them simply write a scrip (and then some of them don't even do that!).
I am quite certain that nobody on here is trying to "play physician" and give out medical advice and I am equally as certain that no one, in their right mind, would take the advice of an anonymous person on a chat board as "actual medical advice" if it were something that would/could harm them. Most people are intelligent enough to figure that out for themselves.
Please don't stop with the great advice people, just because one person seems to be offended by it. Many posts can be taken out of context or misinterpreted...(I have done this myself before), I think this is what has likely happened with Angellee.
The only thing doctors or researchers can do is trial and error. We all do what works for us. There is a reason why docs ask us for follow up visits. They want to know what we are doing and if it is working. Bodies seem similar, but all diets have variants since we are all so different, which alter the outcome of the research. Your diet seems to work for you. Great! I am still adapting mine to my specific needs.
The only thing doctors or researchers can do is trial and error. We all do what works for us. There is a reason why docs ask us for follow up visits. They want to know what we are doing and if it is working. Bodies seem similar, but all diets have variants since we are all so different, which alter the outcome of the research. Your diet seems to work for you. Great! I am still adapting mine to my specific needs. Oh, and I like lamb, too. Married? (joke)
Well you just got us all to define a support group and explain it’s purpose.
I agree with all the others here, we are adults we check out info for ourselves but
the shared life experiences and tips and hints are invaluable. Perhaps if you suffered
with a chronic, often debilitating, degenerative disease you could appreciate this group of people
for what they are. They are a wealth of living experience that can not be taught in any
medical program. I am a critical care nurse with several letters and distinctions after
my name and have found this specific group of individuals to be anchors for me dealing with this disease.
None of my medical knowledge can even compare to the ‘living knowledge’.
I would hope in future you never ever need a site like this but if you do please respect it and the people
on it for what they are, not for what they aren’t.
i just read all the posts on here and let me just say WOW!!!!!! Angellee this is a support group and you are not supportive and in my opinion YOU are causing us that have PsA more harm than any SUGGESTIONS or OPINIONS could ever do on here. I do not have any Letters following my name however I have PsA and thats all i need to know and without this SUPPORT group I would lose my mind its hard enough to get thru life with PsA - I think all would agree with me on this one... if it wasnt for this support group we would have NO sense of understanding and empathy which i think is what gets us to keep our lives in check.
It's nice to know we have each other's back. Glad to know I am not alone in this battle. Like my pulmonologist said today, "You are not crazy to feel like that, just misunderstood."
When I came across this site ( just recently) and read of others pain, suffering, frustration and words of comfort I cried…I cried like a baby! The realisation that here were people who know! I’ve had psoriasis since I was 12 and pain since my early 20’s and I’ve survived on my own and yep, sometines its been dark and lonely. That’s why I love this site and the people on it have welcomed me and I feel at home.
The insight into this condition gathered from the sufferers here is priceless, it helps, supports and nurtures self-effacy which is never and can never be a bad thing.
Thank you for the support help and advice fellow sufferers x
I’ve been reading this support group for at least 6 months now. I never run out and do something detrimental to my health b/c I read it on line. I question anyone’s advice, including the 3 Rheumys I have seen and my family doctor. Some of them have said things that are totally untrue according to PsA “medical” sites and books.
Wow, I am new here by six months and never have I thought people were giving medical advice. I find this site a support system to help people through horrible and wonderful times. Doctors only give us do much time but people here have given hours and hours of support. Keep it coming!
I have a wonderful recipe for an ankle operation if anyone is interested. You just need a hammer, a rusty knife, some twine, a box of toothpicks, and a steady hand. It only takes a few minutes and will save you a ton of money. ;)
Seriously? Let me get this straight. You were surfing, I guess and found this group. Then decided to join as a member just to post this? And you sign your post behind the anonymous name of “Angellee” no last name, MPH? You can not have expected to be taken seriously when you hide you criticism behind anonymity and site no specifics.
You are obviously quite new to the phenomenon known as the “Internet” otherwise you would be aware that there are so many sites delivering medical advice that they are too numerous to count. You are also so new that when you signed up for your membership, you forgot to READ the part that states, “…for informational purposes only and not a substitute for professional medical advice or treatment.” that appears on the VERY FIRST PAGE OF THE SITE. This is very similar to the disclaimer posted on the numerous other medical information sites that I mentioned earlier.
Clearly, you are nothing but a troll, hiding behind a fake name and quite possibly a fake title.
I had belonged to another "Official" Arthritis forum and there was a pushy type who's only advice to everyone's questions was "Take Drugs" "Listen To Your Rhuemy", It was getting annoying. I am greatful to find this forum of people actually suffering from PsA as I am and being able to share different points of view on how to deal with certain issues. And to top things off it wasn't a regisitered doctor who first discovered that it was PsA that I had, but a naturalpath!!!
HOW MANY REGISTERED DOCTORS HAVE HURT OR KILLED PEOPLE WITH THEIR ADVICE!!!!
I would like to say this group has helped me termendously! I am in a flare-up that has been going on since October with no releif. Before I found this site, I felt like a useless piece of waste, but knowing I am not alone with this has brought my spirtis up! I have learned alot and when I go to the doctors now I know what to ask about and also I understand alot more. Like Moray91409 said I have learned more here and understand the disease alot better from here than my doctor! There is nothing better than a group of people that actually understands you can vent to and share your experiences with good and bad. I am VERY thankful I found this site!