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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi John,
Welcome to the forum!
Looking forward to getting to know you.
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Doreen I have not heard anything yet with regard to my appeal but you could say no news is good news. It seems crazy at the moment that my wife who like's her part time job looking after elderly people in a day centre is worried she may lose it if they shut the centre down she has a boss who seem's to think he can do what he like's to his staff. One problem he is not to good on employment law and he has never meet me yet!!! but he will do I feel another problem rising it's head. Is it just me or what but do you feel more pain when it get's cold my elbow's seem to want no part of me at night as they hurt like hell but no matter what it will not beat me all the best to everyone 
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi John, Hello from me too. I am Lorna, I have had RA for almost 4 years. I am 52, married and have 3 lovely daughters. This is the place to be when you are having problems, I was bothered for the first couple of years with my right elbow, have you tried heat packs, I found this very helpful. You are right the cold does make it worse. I feel cold most of the time. I keep well now but I was really ill to start with. You just have to keep believing you will beat this. Positivity plays a big part. What drugs are you on ? Take care Lorna 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Have you been offered steroid injections in your elbows John? I had problems with my left elbow when I was first diagnosed , had one steroid injection in it and so far no further pain in it. (after 10 years).
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Lorna Doreen many thank's for the advice I must admit I have put a hot water bottle on my elbow's and it seem's to help so the heat pack's seem a better idea. With regard to the injection I will ask my ra doctor about this on my next appointment the drug's I am on is mex 10 gr and 1 folic acid they are helping so I feel fine for now. Just heard from the dvla it seem's I now have no license because I have had a mild form of awake epilepsy and must wait a full year to apply for a car license back. I am going to the gp today as he is somewhat reluctant to give me a futher unfit to work cert all this on the very day I have lost my license it is good to get this off my chest I can only hope I am not boring you all
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Aw John I am so sorry to hear this, never mind I always believe when one door closes another opens. The pack I use is a cold /hot pack, freeze if you need it to be cold and heat it if you need to be hot. I used to wrap it around my arm and I had a strap to hold it in place. I don't have problems now. Try eating cherries and dark fruit and veg, the antioxidant properties in them help too. I also take Mangosteen Juice which I swear by, its a tropical fruit juice I have taken since I was diagnosed, I truly believe this has helped keep down my inflammation levels. My Rheumatologist has told me to keep taking it. If you are interested I could give you the phone number of the one I use. It's just pure juice and should not be a problem with your drugs, it just might take away the pain your are in. I am on 15mg of MTX and 200mg Hydrox and Folic Acid plus I take a multi vitamin too. Pain is no joke, it wears you down and takes away your independence. I know, I never thought I would be as well as I am now, again. I have gone from being bedridden to being as fit as before, although I have to watch not to overdo things. Try to look forward. Thinking about you, take care. Lorna
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Lorna The phone number would be great because if it help's to ease the pain that would be heaven and the hot and cold wrap's are well worth looking at. I have just been to my GP who has given me a sick note for six month's and I got it with no problem's just to let everybody know when I get my license back the open top will be mine and the open road had better watch out because I will be back. Lorna thank you for letting me bore you with my problems when you must have more then me to fret about but I must admit this site is great because I have found more in minute's from everybody then my doctor's have said to me all year all the best to you
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi John
I have been taking the mangosteen juice too, for the last 6 months. I had pain pretty much everywhere to a greater or lesser degree but the worst pain was in my shoulders and physio wasn't doing anything for me. Three months ago I saw my Consultant and I was feeling really good but still had the awful pain in my shoulders. She said my disease activity was the same but would leave me another four months before suggesting something else. She said that she believed that antioxidants were beneficial and told me to continue taking the mangosteen juice. I started taking this juice after meeting up with Lorna in Scotland. Lorna will tell you that I was very sceptical about it. I am not a gullible person, in fact the opposite and I took it with the view that it wouldn't make one iota of difference. Well, it may be the mangosteen or just a good phase I don't know but what I do know is that I don't have any pain and haven't had for about 2 months now - not even in my shoulders!!!!! I see the Consultant again next month and am eagerly awaiting what she has to say. Of course it could be a remission and the roof could come caving in at any time but for now I am pain free.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi John, First of all you are not boring anyone, we have all been there, it's very difficult to comprehend when you are hit with a sledge hammer (R A ) I thought I was going to end up in a wheel chair, I needed my husband to do even the simplest things for me, it was soul destroying. I do for others I do not like being on the receiving end. Ask Nras for my home number and I will tell you about Mangosteen and give you the number to call. We can't publish it on here. I have had NO pain for a few years now, Yes you can get the odd ache but who doesn't in their 50's up. At that point I had lost the use of my right arm and I could not turn my head, which stopped me driving. I needed helped on to my feet, I needed fed drinks as I could not hold things. I had difficulty walking, I even had pain in my head and jaws. I wont ever forget how that made me feel. Actually I thought I was dying before I knew what was wrong with me. 2 weeks before xmas was something else. I cried lots with the worry, I had not been on here at that time, I was so afraid at what lay in front of me, I wanted to find out for myself first. My youngest was only 13 and I have 2 other daughters a few years older. This was a nightmare for me, worrying about them and my husband, we are such a close family and the thought something was going to happen to me was devastating. RA hit me like a ton of bricks, each week it was worse than before. In the space of 5 weeks I was an invalid taking loads of pain relief and still in agony. And now I am in my garden all the time cutting bushes, digging, planting doing all sorts. The point I am making is there is life afterwards and the open road better watch out. Before you know it you and your fancy car will be back on the road enjoying the freedom. It will happen wait and see. Be positive too it really helps. I found NRAS a year past March and I have found it a great place to talk about all to do with RA, and I have made some lovely new friends. I know I sound a bit like Pollyanna but although I don't suffer the same as most on here, I have had more than my share, and if I can help others see if I can come out the other side and give a little hope, then I will. Thank you Sheila for being honest about your experience with Mangosteen too. Then it's not just my experience. Take care John and I look forward to hearing from you. Lorna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I hate to put a spanner in the works here, but if mangosteen juice (at £23.91 for a 950ml bottle) really is so amazing, why oh why is it not prescribed as a painkiller by our rheummies? There are lots of other berry juices out there with the same antioxidant properties as mangosteen juice which are also MUCH less expensive. A good friend and neighbour was persuaded by all the hype to get some for her husband who had motor neurone disease - the claims are that it can help a whole heap of illnesses. It didn't help him at all, but gave them so much false hope it upset me incredibly. There is no substitute for the proper medication as it is this, not mangosteen or anyother juice which stops our joints deteriorating.
I KNOW I'm on my high horse here, but as someone who has suffered extensive joint damage it's a subject very close to my heart. It's good to try all these things, and if they help that's great, but I would hate people to run away with the idea that this is a cure all for pain - it isn't. View anything like this as an addition to your pain routine but don't set your hopes on it.
There is currently no clinical research on this juice, so there really are no guarantees.
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jean, I am not saying this juice replaces our pain relief and I do know that there are others who have had RA for a long time. Before the drugs were as they are now joint damage was horrendous. I feel for you all, no one knows what the future holds but I am checked regularly for joint damage and my consultant says to stay on it. I have no pain so there is no need for pain relief. At £23.91 as you said a bottle, is it not worth it just to try and see. I take all my medication drugs too. I don't know why I do not feel pain but I do know how I felt 4 years ago and I never want to go back there. You asked about our rhuemmies prescribing it, its the old story, funding and it is not medically proven. My doctors have said they can't believe the difference in me, that they talk about how ill I was and the difference now. I do not mean to cause you any upset, I really like you as a person. I am only saying what I myself have found. If I could wave a magic wand I would help everyone. Sending lots of love. Lorna xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Lorna,
You haven't upset me at all - I'm a tough skinned old boot, as you know, and I am so pleased this helps you. You have found this to help and I am sure it will help others too - but I just don't want people thinking it will cure them!!!!!
I am absolutely thrilled you have no pain - long may it continue. I am not doing too badly either at the mo so everything that will cross is being crossed (for us both!)
Take care, Lorna
Love Jeanxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Lorna Thank you for your advice with regard to the juice mangosheen and for the record I take on board the point Jean is making as it may not work for everybody but the old saying you have to try first to have an opinion come's to mind. I will send an email to nras to see if they would give me your number and if they do then I will contact you once again thank you for the info you never know
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Lorna I will contact you tomorrow for the detail's
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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I must back Lorna up here. Neither of us said it was a miracle cure or that it takes away pain. We are both still on our medication and not taking mangosteen as an alternative medicine. Both our Consultants have agreed that we carry on taking it because it seems to be doing us good and antioxidants I am not, nor would ever tell other people to take it. There are many things on the forum that I don't agree with but I am old enough and ugly enough to make my own mind up about things. People ask on the forum about how other people cope with RA and it's many symptoms and I am sure Lorna would agree that we are just relaying our stories. Make of them what you will.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi John Think I introduced myself previously but have been away from the forum for a week or so due to 'unwellness'! This complementary medicine 'thing' is a very controversial subject which recently caused a real hullabaloo on HealthUnlocked. For this reason I am not going to get involved! What I would say from my own experience is that it is a case of each to his own. What works for one, doesn't work for another. But beware ... some items can be contra-indicated when taken with disease modifying drugs, for example methotrexate and grapefruit ... aargh, don't do it! I have had RA for over 23 years and in that time I have tried almost every available pill, potion, cream, oil, juice, vitamin and anti-oxidant going. Quite possibly spending literally thousands of pounds on these products in the hope that one would provide some help from a disease raging out of control. None came even close!! I have severe disease and one of the people mentioned by Lorna with much long term joint damage. Very few alternative/complementary treatments have been scientifically proven to be of any use in the treatment of inflammation and the pain it brings with it. The best one, which has shown some evidence of effectiveness in lowering inflammation levels, is Omega 3 oil. Anti-oxidants are good for the body generally but there is no proof whatsoever that they act as a pain reliever. You will find plenty of claims to this effect but none grounded in scientific fact. Pain. We feel pain for a reason! It's the brain's way of letting us know that our body's require attention. Without those signals who knows what is going on! Pain relief as prescribed by a doctor, and taken as required, should satisfy the requirements of most people and provide adequate relief alongside disease modifying drugs, anti-tnf drugs etc. That said what anyone wishes to try is entirely up to them but always check with your rheumatologist first before starting any new product. Cold packs are particularly useful to ease the pain of inflammation in individual joints and hot packs for painful (but not inflamed) joints. Joints showing longer term problems often benefit from steroid injection. Hope things settle down soon for you Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
Posts: 40
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Hi Lyn Thank you for your input in which you make a few very good point'sI suppsoe it would make sence to ask my RA doctor first to make sure it is ok to take juice just in case. I suppose the point in question is it has been good to take all point's of view and it has made for a good discussion on the forum site
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011
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Lorna thank you for the chat on the phone and I do agree once the juice is checked out by my RA doc then I will give it a go. Once again thank's it was realy nice to talk to someone from the forum all the best John
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi John, It was nice to talk to you too. It goes without saying To talk to your consultant and doctor first, that way they are aware. Olso this is taken ALONG SIDE NOT INSTEAD OF YOUR THERAPY DRUGS. It is after all only a super fruit and should not be a problem. I truly hope you get some relief from it. Remember It's Mangosteen Gold, there are others, but this is the one I use. Take Care and I do hope it helps you too. Lorna
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I think it's great that we can all have our say, John, and whether we agree or disagree, we remain close friends. That is one of the brilliant things about our forum.
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