Newbie

Hi all I have just joined and here is my story. A lot of strange things started happening to my body in Jan 2012. Itchy sore eyes, under arms red raw, overheated body, brain working overtime, unable to sleep, burning feet, skin redness feet, upper arms, chest and face and intense back pain across the middle of my back. This went on for 6 weeks and then settled down. Since then skin redness on feet, hands, all of arms, chest, neck, face, back and abdomen and continual back pain, always tired and can not be on my feet for long periods. Some unusual things showed up in blood tests. In May 2012 a friend was studying to be a herbalist and put me on liquid turmeric this has been a life saver for my back pain. I saw a rheumo that tested me for Sjogrens which was negative and he put me on plaquenil and prednisolone. Very bad side effects and I only took them for 2 months. Some of the upper arm redness did lessen whilst on these drugs. I saw another rheumo that told me stress related and did not even examine me. He sent me to a breathing specialist. A waste of time and money but a learning curve. I started going to the rheumo clinic at the St Vincent's hospital (Melbourne) last December. Professor did lots of tests which all showed nothing so sent me to the Dermatology clinic. I first saw them in April and they tested me for Dermatomyositis which was inconclusive and suggested Em. They put me on 300mg of aspirin, then Endep and then Lyrica. Could not tolerate either of these drugs.

My herbalist has tried many herbs trying to help me with no diagnosis. The herb that has stopped my burning feet is Paeonia. All last summer I had no burning feet. I take this in liquid form and always mixed with at least two other liquid herbs as the herbalist says that liquid herbs work better when there is more than one herb in the mix. I have also taken a powder capsule paeonia which does not work aswell as the liquid.

I have also noticed my memory has been effected since this has all been going on so I know I have not included everything.

Please feel free to offer any advice or ask any questions about any of this.

Tara

Thanks Tara for sharing your story, the herbal information is very interesting and definitely something I would be interested in, have just made an appointment to see a natropath so will be great to talk to her about trying this! You sound like you have been thru so much over the past couple of years, really nice to hear that something natural is helping you. When I took Lyrica I couldn't remember things all the time it was scarey!

Kerry

Hi Tara, I know you are trying to help, but be aware of recommending any drugs even herbal ones as sometimes they are not suitable. I personally hadn't heard of Paeonia but have just looked it up. If people are taking any form of anti clotting drug even aspirin taking it can cause bleeding. There are also interactions with other drugs. So, before anybody tries these things they should discuss with their doctor before doing so.

It is all too easy to think that just because something is 'natural' that it is also safe but yet nature is responsible for the constituents of many drugs and also many highly toxic poisons.

Likewise, as Sheltielife says, there can also be interactions with other drugs, herbs, vitamins and even some foods so we strongly recommend that any and all treatments, natural or otherwise, should be discussed with a qualified medical doctor and/or a pharmacist to ensure they are safe.

In our 'useful resources' section we also have some guidance and links on interactions which are a useful starting point to inform discussion with a doctor/pharmacist. Here is the link: http://www.livingwitherythromelalgia.org/page/the-pharmacy

Here is another article which may be helpful: http://www.livingwitherythromelalgia.org/page/eating-for-health

Hi I understand and I am not recommending anything I just want to share what has worked for me. My doctor, rheumo and dermatologist all know that I use turmeric and paeonia. The rheumo told me he could give me evil drugs (his words) to take or that I could continue on the herbs. Thank you for the advice and links it is much appreciated.

I do feel a relief at finally having a diagnosis. I think l lasted 9 days on the Lyrica. Severe headaches and nausea. You do get desperate enough to give anything they offer as it could be the one that works for you.

It's fine to mention things that work for you as long as you point out to others that they should check with their doctor before taking anything not prescribed. These days I don't even take what a doctor gives me until I look it up and use the things on here to check for interactions. I had a really bad experience with Gabapentin due to it interacting with something I was already on and that was prescribed by my doctor who knew what else I was on. When I checked for interactions after the event I found the two taken together could cause coma or even death! In my case I was in a coma for 2 hours. So, even doctors don't always get things right!

Sorry I did not realise and I will make sure that I point that out. You sound like me I double check everything as yes doctors do also make mistakes. My mum takes warfarin I can't believe how many times she has been given other meds that she cannot take, I am her carer and she checks everything with me that the doctor gives her. How awful for you that must of been terrifying.

The point is that doctors are not pharmacists! They can't be expected to know everything about drugs, but they should check up before they give new things out. I have always felt that the doctor should perhaps recommend a drug, but it should be left to the pharmacist to check knowing the other drugs that people are on. My GP surgery dispenses it's own medication as there isn't a chemists nearby. They don't have a qualified pharmacist on site. When I queried if this should be allowed I was told they are trained, but it takes years to qualify as a pharmacists.

I am lucky that my husband was a research chemist, not drugs, but I have a friend who worked for ICI at the pharmaceutical division as a research chemist and so he knows a lot about drugs, but not the newer ones as he is retired now.

Yes it was terrifying as I was on my own sat at my desk. I looked at the clock it was 1 p.m. the next time I saw it the time was 3 p.m. At first I thought I had fallen asleep but people said it didn't sound like it as I would have felt it coming on and I had no warning at all.

The other thing is each time I go to see a new specialist at hospital they ask if I am allergic to anything and when I tell them beta blockers they are surprised and I have always told them, but they obviously don't put it in my records and so now I wear a med alert necklace with it listed. A good idea for anybody who is on a lot of prescription medication.

So true and I even find pharmacists these days automatically give the generic brand of meds I already take and I have tried them and I have problems with them so when they do this I make them change them. Everyone is in so much of a hurry these days and I feel that things do not get checked properly and that you have to check yourself. The med alert necklace is an excellent idea.

I joined Dignity in Dying and got my med alert through them. Only one problem is if your drugs are changed you have to get a new one if you want the list of medication on it. I got it mainly because of my allergy.

My doctors are currently advertising for a part time dispenser and the only qualification required is NVQ2 which is merely the one that carers have, nothing at all to do with medication! Doesn't seem right to me. As for generic brands even doctors are told they can only prescribe generic brand unless there are problems. One of my friends has to have the brand name one for thyroid problems as the generic one doesn't work the same way. All saving money!

Open paranthesis : Medical doctors who want to diagnose you with an anxiety disorder after you told them your symptoms are... ... not fun : close paranthesis. (See: Safe (1995, Todd Haynes))

No that does not sound qualified enough at all. Here when you have your script filled they ask if you want the generic brand but a couple of times they haven't asked and just hand over the generic brand. I hand it straight back and make them change it.

Yes totally agree. To be told it is stress and not even examined is very disappointing and annoying.

JW13 said:

Open paranthesis : Medical doctors who want to diagnose you with an anxiety disorder after you told them your symptoms are... ... not fun : close paranthesis. (See: Safe (1995, Todd Haynes))