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Furrydog
10-07-2008, 02:07 PM
Wanted to say hello to everyone. I'm in the UK and was diagnosed this year after an episode or urticarial vasculitis. Then got joint pains, currently have joint pains and fatigue.

Am interested in alternative therapies.


*waves*





*finds waving hurts shoulder*

*waves less vigourously*

rob
10-07-2008, 02:55 PM
EDIT: Please read my explanation and clarification in my post dated Oct 8th below. I'm sorry for any confusion I may have caused.

Rob

Moderator

sits_inthe_corner
10-07-2008, 03:43 PM
Hello Furrydog

Welcome to the site. There's lots of information on the board and the people here are very friendly and supportive. :)

I'm in Canada, in lupus limbo. Lupus runs in my family both my sister and my mother.

Oluwa
10-08-2008, 12:31 PM
Rob..

I didn't know we do not discuss alternative medicines. I thought we don't allow solicitation of alternatives or the sale of anything.

The site, Admin,..owner or as us as a family do not advocate alternative medicine without being under the supervision of a doctor, nor does the site endorse anyone's opinion. Nor do we advocate their use of any drugs outside what is prescribed and how it is prescribed.

We have in the past discussed alternatives, food, herbs, exercise, vitamins, minerals, Eastern medicine and therapies....A subject I must say I have enjoyed...and some that have annoyed me.

I understood we do not 'endorse' ones choice of therapy be it conventional or homeopathic but open to the discussion of it, their experience with it.

Have I misunderstood the rule, Rob? I just don't want a person, Furrydog to feel misunderstood if the intent wasn't there to sell.

I didn't read Furrydog's post, I am only referring to your reply. So, I am unaware of what he said, so maybe I am off beat?

Love,
Oluwa

rob
10-08-2008, 02:14 PM
Hi Oluwa,

The post in question was this members very first post, and in my opinion it came across as an advertisement for these so called "cures" or "miracle treatments" that we all have seen on the internet from time to time. We all agree that these sort of "treatments" can be harmful and very dangerous.

These two factors are what I considered, and they are the reasons for deleting that particular post. There is no rule against discussing alternative medicines, and I'm sorry if my wording came across the wrong way. I saw what I thought was an ad for potentially harmful products. If that was not the intent of the new member's post, then I apologize.

Rob

Furrydog
10-08-2008, 02:30 PM
No, I mentioned them because I want to hold off from taking hydroxychloroquine for as long as possible and wanted to know if anyone else had used alternative therapies.

If I had been advertising, I would have given some sort of website or address and asked people to contact me to buy them- which I did not do . As it is, I am new to this and have spent lots of money buying these 'alternative' treatments when treatment on the NHS is free. So I wanted to know if I was wasting money or not.


I also wanted to ask about massage, yoga and pilates for join pain. But don't know if they are endorsed by the rheumatological association or not, so I won't ask for now.

rob
10-08-2008, 02:35 PM
No, I mentioned them because I want to hold off from taking hydroxychloroquine for as long as possible and wanted to know if anyone else had used alternative therapies.

If I had been advertising, I would have given some sort of website or address and asked people to contact me to buy them- which I did not do . As it is, I am new to this and have spent lots of money buying these 'alternative' treatments when treatment on the NHS is free. So I wanted to know if I was wasting money or not.

Hi Furrydog,

I completely misread and misunderstood your intent. Please accept my apology for jumping the gun and drawing the wrong conclusion. I will not do that again. Thanks.

Rob

Furrydog
10-08-2008, 02:43 PM
Thanks Oluwu for clarifying and to Rob for apologising. It was a bit offputting having my first ever post deleted.

But it was really nice of you to write what you did above and you didn't have to.


I might write the post about massage, yoga and pilates then, if thats ok?

sits_inthe_corner
10-08-2008, 05:53 PM
Hey Furrydog

My doctor asked me to stay away from yoga. She feels that is too stressful on the joints. She flat out forbid my sister to continue with yoga.

I do tai chi, that's gentle and you move your joints. I find it helps alot. It's also good for your balance, circulation and breathing.

I take plaquenil and arthrotec 75, I also take omega 3 fish oil to greese the joints and glucosamine to help repair the damaged tissue between the joints.

You can buy soft sided wrap around joint braces at the local drug store. The brand I use is tensor.

It helps to ease the pain so I can do house work and drive my car with out having my knee seize up.

Hope this helps.

rob
10-08-2008, 05:58 PM
That's absolutely OK Furrydog, please do. I'm sorry for the misunderstanding.

Furrydog
10-09-2008, 02:17 AM
The problem is that my hips and shoulders hurt. Am not sure if I can wrap anything around them :(

Saysusie
10-10-2008, 06:52 AM
Oluwa;
How odd that your doctor told you to stay away from yoga and my doctor advocates persons with Lupus doing yoga. She claims that it is much easier on the joints due to the gentle stretching. Jeez, how do we make informed decisions when we get so much conflicting advice??

Rob;
Please do not beat yourself up about deleting the post. There is nothing wrong with being diligent. Often, if I am not sure, I will ask the poster what their intent was. I, then, either delete or respond - depending upon their answer. You are doing an excellent job, so don't be too hard on yourself.

Furrydog;
Thank you for hanging in there with us. Yes, you may write your post about massage, yoga and pilates bearing in mind the issues that Oluwa pointed out. We do discuss many alternative therapies here, but we do not endorse anything. Personally, I do yoga, pilates and swimming. I find that some form of regular exercise (making sure that they are non-jarring, do not aggravate our joints and do not over-exert) actually helps with the pain and fatigue. However, even with this, we often find that we must take medication also. Often, the regular exercise helps to determine that dosage of the medication. Plaquenil (Hydroxychloroquine) is one of the best tolerated medications in the Lupus regimen and, for many, it helps with the fatigue and joint/muscle pains. I understand you for not wanting to take a lot of medications, but perhaps you can do some studying about Plaquenil to understand its benefits to us and that might help to alleviate some of your trepidation.
In the meantime, please feel free to come to us with any questions that you may have. You will find that our Rob is a wealth of information, as are all of our family members here.
Welcome to our family :lol:

Peace and Blessings
Saysusie