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Discussion Starter #1
Hi everyone,
My name is Gwen,im a 29 year old mother of 2,who has recently been diagnosed with Lupus,Fibromyalgia and possibly Ankylosing Spondilitius.
I am delighted to know that it is not all in my head after 6 years of being told and feeling like it was!
The main reason i joined here is to seek others who are stuggling just as much as me with having this invisible illness.
I look forward to getting to know u all!
Before i go i would like anyones opinion on all the homeopathic remedies that are available over the net,has anyone ever tried this route and found even the slightest relief?
Your opinion would be much appreciated,
Kind Regards,
Gwennie x
 

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Hi Gwen and welcome,

Yes, this is a great place for advice and support. A lot of friendly people here.

As for your question on homepathic remedies. Although I can understand the wish to try anything to find relief, I would be very very cautious. Generally any website which is operating commercially should be seriously avoided!!

Some homeopathic remedies may be alright but would need to be prescribed by an experienced practionner and in CONJUNCTION with your rheumatologist who absolutely MUST know about anything you are taking.

We often think that natural and herbal means it's safe but that is not always the case.

Firstly because lupus is a CHRONIC disease which can have extremely serious implications if not treated correctly. You do need the traditional disease modifying medication that lupus patients are prescribed.

Secondly, some herbal remedies can actually be dangerous by having a serious effect on organs and have put some patients in mortal danger.

In short, please don't take anything, no matter how harmless you think it is, unless you have spoken to your rheumatologist first.

Katharine
 

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Hi Gwennie,

Welcome!!! Ideas for homeopathic remedies...I have none. Ideas for keeping yourself healthy...I have many. When your tired, rest. I try very hard to work in a 30 minute workout everyday, even if it's slow because of joint pain. It will help keep my bones strong and makes me feel better. I eat healthy foods like whole grains, fruits, veggies, nuts and we can't forget the occasional chocolate (they say it's good for your heart and I'm all for that).

For me, if I hear about a really good book that's uplifting, I read it! Anything is better than the day to day drudgery of this disease. Luckily I am married to the most wonderful man in the world and he's always there for me and that helps but I still must do what I can for myself to give myself that boost of self-worth. I still work part-time and that makes me feel good.

I am my own worst enemy if I let myself get caught up in this disease and focus on it, especially the pain. Be your own advocate!

Hugs,
 

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Hello. I also have Sle and Fibromyalgia and a couple of other problems but we don't need to get into that right now. They are right listen to your body if you are tired rest because if you don't you will regret it in the long run. I to would be careful with the homeopathic remedies because it can have really bad consequences with these diseases. Other then that try to stay healthy and keep coming back to this site. You will meet a lot of good people here who have had the disease awhile and can give really good advice and support because we understand what you are going thru. You take care and keep your chin up. :hehe:
 

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Hi Gwennie :welcome:

This is a fantastic website, I'm fairly new too, but its been a great help to me already, whatever your question or if you are feeling down, there is always someone here to cheer you up and provide positive help.

How old are your children, mine are 5 and 21 months, so I know how hard it can be, especially when you feel exhausted but have to keep going.

I think you have been given sound advice by Katharine and Frono regarding homeopathy, I can't add anymore, I just try and eat healthily and get some exercise by walking my son to school.

Take care
 

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Hi Gwennie,
Welcome to the site.
I too have fm and lupus, and I know how scary it can be to have that diagnosis:worried: , but this site is wonderful for support and info:) .
Rest when you feel tired, eat healthily, and always find some you time.
Mandy.
 

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Hi There and Welcome Gwennie,
I had a wonderful friend who was a very respected Homoeopath but even he had no magic answers. The best advice, and I know this is disappointing, is downsize your life and learn to say no.
x Lola
 

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Discussion Starter #8
Thanks everyone.

Gee,thanks everyone,i am stunned that u guys have taken time to reply to me.I have never done anything like this before and am a bit of a technophobe!
I will take ur kind advice very seriously before buying anything from the net!
I am just so desperate to try and beat this for the sake of my wee family.
This is so not the person i want to be forever nor is it a life for my precious children.Who are 7 and 4 years old.
Thanks again,hope to speak soon,
Gwennie.
 

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Hi again Gwen,

I'm just wondering, when you say you are so desperate. I mean we do absolutely understand that, but have you been put on treatment yet? and if so what?

The treatment for lupus can take rather a long time to actually start working and you need to be patient but most people will see a pretty major improvement in their quality of life once it does start working. You musn't give up hope.

Remember that a lot of people on treatment never come to this site as they are feeling great and busy with their lives. Many of the people who write here are newly diagnosed, not yet diagnosed or the rarer more severely affected.

hugs :hug:
Katharine
 

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Discussion Starter #10
Hi there Katherine,

In response,yes i am on meds.i have been taking Hydroxychloroquine,Naproxen and Tramadol for the past 3 months,however when i say im newly diagnosed i mean since my formal diagnosis then. Lupus was infact 1st mentioned to me in May 2005 and it has taken almost 3 years to have come to this conclusion.Overall i feel it began 7 years ago following the birth of my 1st child.Over these years i have been on various anti-depressants,constant pain killers and anti-inflammatories. It has rapidly taken over my life and i want to reclaim it by becomming as informed as i can be about this disease,hopefully this is where my journey starts.
Thanks for ur time and interest,
Gwennie x
 

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Hi again,

Just to encourage you a little. 3 months is a very short time treatment wise. Especially for plaquenil (hydroxychloriquine) which can take between 6 - 9 months to work well.

If, more long term, the medication you are on is not sufficient your rheumy may well put you on something else as well. There are plenty of options for treatment now and it is now common treatment to have a kind of cocktail of different meds so that they can be fine tuned to the individual.

One very important thing is not to belittle your symptoms and/or pain when speaking to your doc. Sometimes we tend not to complain enough or we think that nothing more can be done to help us when actually there is plenty more can be done!!

Katharine
 

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Discussion Starter #12
Thanks Katherine.

Cheers again,i am just so worried about the long term effects on my body due to taking so many meds!! Will i ever be able to be drug free or is this the outlook for the rest of my life?
Any advice ?
 

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I think we are all very worried about taking medication. However, plaquenil itself, which is a very important, disease modifying drug, has little or no side effects and has many beneficial effects.

The thing is that the side effects of not taking the drugs are extremely severe. We musn't forget that although the disease can be largely treated to improve symptoms and quality of life (and not become as serious as it used to) it remains a chronic incurable disease. That doesn't mean that it should obssess us or make us worry constantly but it has to be taken seriously.

My Mum has been on heavy medication (she has never has as good treatment or follow up as I now get) for almost 30 years and she is fine. She has no "other" health problems and looks as fit as a fiddle. She is now 70.

I never ever took medication before my diagnosis but I suppose I found it easier to accept having seen that Mum has had to for so long and also knowing how potentially serious the disease can be. However, I am glad that people are now treated in a better way, with less heavy drugs and more a mix to fine tune what's needed.

give yourself time, try to relax and take advice from your docs,
Katharine
 

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Hey Gwennie, I know you looked into Chat, please stay sometime, we have a good time in there and love having new ones join us.
x Lola
 

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Gwennie,

Welcome to the Lupus Site. Accepting that we have a life long chronic illness is not easy, for anyone. I can understand your concern about the effects on your body from the medications we take. I had a nice long remission where I was completely medication free and when it came roaring back to life I was a bit reticent about taking medication again. However my other choice was to become bedridden, grouchy and glum. Not the way I choose to live my life.

Plaquenil/hydroxychloroquine is the main medication and it has the fewest side effects of almost any drug on the market including Over The Counter Medications that we often buy without a thought. If you need stronger medications, like I do, to keep things under control realize we take much smaller doses than the illness they were originally created to treat. There is probably some level of trade-off between quality of life and length of life but I don't think it is as extreme as one might think it is.

There are a couple of things that you can take that help some people with some symptoms. Omega 3 oils have been found to relieve pain levels in some patients. I can't say for myself as my body doesn't like the capsules and complains all the way through the digestive process. The other alternative is to eat fish 3 times a week. My family manages 1 a week as fish is not cheap. There are other topics that you might find helpful in the complementary therapies forum. You can see what other members have tried some with success some without. Cutting out sugar is one that some people have good success with.

Our chatroom is quite friendly and definitely is not doom and gloom.

Take care,
Karen
 
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