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Rheumatoid Arthritis

(41 Posts)
JoAnne427 Sat 27-Apr-02 03:02:16

Hello. Today I was diagnosed with rheumatoid arthritis. Onset began about three weeks ago, and while I had hoped it was maybe just some strange infection I had picked up, unfortunately the specialist I met with today said otherwise.

I've searched online - and am very saddened by what I have read. The doc today said she is very hopefull I will never have to be in a wheelchair; quite frankly, that drove home what may be in store. Right now, I write this hunting and pecking at the keyboard, as my hands seem so foriegn to me. I can't even change my dd's diaper. And I write for a living - so am concerned about that also, how I will provide for my daughter?

I realize this is very personal - but anyone else out there have this? I want to go hiking - rollerblade - play racquetball - do everything with dd that I possibly can. Perhaps what I have been reading are extreme cases,and I can function just fine. Sooooo...if you have any info, I am a willing, and hungry, recipient. Thanks.

bayleaf Sat 27-Apr-02 09:21:08

Sorry I don't have any info - I just wanted to say how sorry I was to hear your news.

I went through a week or so of fearing that I had it before being diagnosed as something else ( it was just my hands that were numb - I forget what the actual affliction was called and it self-healed eventually) but during that week I spent a good while surfing and feeling real dread so I can well imagine the picture you have.

This probably sounds eally crass but the only thing that gets me through the less than perfect bits of my life is concentrating hard on how much worse it could be - when I had a late miscarriage I had to keep thinking ''yes well someone somewhere has lost a child that they've known and loved right now and probably knows they can't have anymore etc etc) We're all different and I know that dh thinks I'm mad doing this - he just needs to concentrate hard on feeling 'sorry for himself' to get through it. You have every reason to feel sorry for yourself, so if it helps you to get thru then take what time to sit and cry - but if not then take what comfort you can from remembering that you HAVEN'T just been told that you have an illness that will take you away from dd - and you WILL manage to care for her somehow.

We'll all be thinking of you and rooting for you.

ScummyMummy Sat 27-Apr-02 10:09:48

Joanne, I'm so so sorry that you're going through this. I don't have any experience of rhematoid arthritis at all, I'm afraid. All my thoughts and love though- I hope you'll be able to adjust to this and that the outcome is as good as it can be.

mears Sat 27-Apr-02 17:47:35

JoAnne427 - a friend of mine has rheumatoid arthritis and at it's worst a couple of years ago she had great problems with mobility having very swollen knee joints and painful feet. She is a seamstress and could not do any sewing.

She was treated with anti -inflammatory drugs and eventually started gold injections. She also examined her diet and found citrus fruits and other foods made her condition worse. I am sure she read up about diet so I will ask her where to get info.

She also attends a homeopathic specialist ( who originally trained as a GP) who has a special interest in arthritis. Once she started homeopathic treatment she was able to reduce then stop the anti-infammatories. She contines with the gold injections. She also makes a point of having a rest evey afternoon. If she gets too tired she feels her symptoms get worse.

She is really well at the moment and has been sewing again for some time. It must be daunting for you getting this initial diagnosis. Your symptoms can be managed but it may be trial and error initially finding the best management for you.

tigermoth Sat 27-Apr-02 18:56:50

No advice, but tons of sympathy. I do know of one person who suffered from rheumatoid arthritis - he was an engineer, and worked with his hands. He was also a keen cricketer. He had suffered from the condition for years and although he said he was in pain sometimes, he managed to work and play sport pretty consistently.

I hope you find lots of positive information about this condition.

Thinking of you, JoAnne.

mears Sat 27-Apr-02 19:19:26

JoAnne427,

As promised the advice my friend found extremely helpful in managing her symptoms are in the following two books written by Margaret Hills SRN,
'Curing Arthritis - the drug free way' and 'Curing Arthritis Diet Book'. They are part of a series she has written and are published by Sheldon Press.

She also recommends support from Arthritis Care whose website is www.arthritiscare.org.uk

Hope that is helpful.

JoAnne427 Mon 29-Apr-02 13:39:02

Thank you everyone for your responses, it really does mean so much to have this forum to vent. I am consistently (happily) surprised at the caring and support that is always shown here for each other.

Bayleaf, you're right - I have been having moments of clarity when I realize that there is so very much to be appreciative of, and as Tigermoth points out with her friend - life can be continued as normal, perhaps with just some adjustments.

Mears, thanks for the info. I have been toying with doing an "elimination diet" I discovered online that helps determine food allergies that may worsen the symptoms. I will also have a look at the information you recommend, and fingers crossed, may be able to pinpoint things that will help. And Scummymummy, thanks for the kind words.

Jasper Mon 29-Apr-02 23:57:17

Joanne, I am sorry to hear of yuor diagnosis and it must be a big shock. I dont know much bout RA but I do know a woman through work who has it. She is about 40,(looks about 25) has three kids- two younger ones born after the diagnosis. To look at her you could not detect anything wrong at all. She says she has good days and bad ( stiff) days. She has a very cheery disposition and I once asked her if this was her natural way or if she had chosen to be like this due to her illness. Her view was she just had to get on with it, she was a lot better off than most paople and she had three fab kids.
Hope this does not sound fatuous, but I wanted to let you know there are folk out there with the same diagnosis living normal happy lives.( I know you know this!)
Best of luck

sis Tue 30-Apr-02 10:58:30

JoAnne427, it is a few days since the diagnosis now, how are you getting on? I wish I could add something constructive to the thread other than to wish you all the best and hope that you find some way of minimising the symptoms. Don't forget that we are all here if you need to have a rant...
sis

emmagee Tue 30-Apr-02 11:04:39

JoAnne

Sorry to hear it ended up being so serious, my knee is still really playing up so I am off to Doc again tomorrow. My family have had quite a few sufferers of this and I know that treatment in the last 20 years has changed dramatically - used to be very reliant on steroids. When I get the chance I will call my aunt who suffers and see what she can recommend. I do know that complementary therapies and diet have played a large part of her treatment

JoAnne427 Tue 07-May-02 03:02:28

Emmagee how did it go at the docs? Any news on the knee? I hope you're feeling better, and that it is a temporary condition. I started the steroid treatment yesterday since nothing else was working - I was getting no sleep and it felt like every joint in my body was going to explode so I gave in...and it does seem to be working, as I can now type!

Jasper, thanks for the info about your co-worker -I have been concerned about how this will affect my ability to have more children - the specialist said I just have to make sure it is a planned pregnancy and go off the drugs before conception. But it helps to hear of others successfully moving forward. And it is amazing how important attitude is!

Sis I appreciate your comments. I am doing well - had a crazy weekend - dd's 1st birthday party on Saturday - barbecue with 40 people - and then the roof caved in - literally! Spent all day Sunday and today having a new roof put on - so no time for self pitying! Life certainly charges on, doesn't it?

Annie12 Wed 18-Nov-09 22:43:33

Hi

I have just put RA in the search box and found this old thread. Can I ask you to google Low Dose Naltrexone? Vitamin D? Probiotics.

http://www.ldnnow.co.uk/

My daughter has RA after having her first baby by IVF. Is there a connection I wonder? Yes.... Anyway, the Yahoo groups on LDN will show you how effective LDN is. Good luck

Annie12 Thu 19-Nov-09 11:30:21

Hi, Because my last message is somewhere up above I am doing it again in the hope it will be seen!

I have just put RA in the search box and found this old thread. Can I ask you to google Low Dose Naltrexone? Vitamin D? Probiotics

Dr Chris Steele is behind the petition for this drug Low Dose Naltrexone to be trialled for use with autoimmune diseases. You can get it from various doctors though. It has been used effectively in large doses for drug addiction. Used in minute doses it works for RA, MS etc. etc. Google LDN Youtube, Up the Creek with a Paddle and visit the website below. It is all very encouraging when you go onto the Yahoo groups for LDN and actually read how well people are doing on this not toxic, cheap drug.The drug works on the endorphins in the brain to make the immune system work for itself rather than suppress it as the drugs dished out by our wonderful NHS does.

http://www.ldnnow.co.uk/
http://www.lowdosenaltrexone.org/bbihari_cv.htm
http://www.lowdos enaltrexone.org/

Duritzfan Thu 19-Nov-09 18:27:36

Hi - thanks for all this, I had bloods taken yesterday for rheumatoid arthritis testing... am returning to the doctors tomorrow for the results and am very nervous.. the ldn stuff is really interesting.. good luck to all of you x

WallyDoodle Thu 19-Nov-09 19:30:59

I have rheumatoid arthritis, when it was bad it was really bad and I was predicted to struggle with even walking. It took me two years to get it under control and honestly, since then (6 years) I live an almost completely normal life. I have written up a phd thesis, I just took a few more breaks than other people. I have done half marathons, taken up skiing again and don't feel limited in any way, just slightly more careful.

Had I caught it slightly sooner I would have no problems at all (I sustained some osteo type damage from the prolonged inflammation)- which it sounds like you have managed to do (catch it early, not damage anything). It only took me so long to get the right drugs as I was having staged surgery for something else and they couldn't start treatment straight away.

I would not be scared off either by the side effects of the drugs they offer, you are so closely monitored while they find the right drugs. If you want to explore complementary treatments, the one I found helped was acupuncture, but don't put off the real drugs as the sooner you are better, the less likely you are to damage anything permanently. I was even told this at the homeopathic hospital ("trust people who say complimentary treatment not people who say alternative"), so not a bias of mine. You can always ease off the drugs once you have got the inflammation under control and try other things, but it is good to have the right drugs that work for you waiting in the wings.

The thing you must not do just now is look at the older people at the hospital and think that is your future - it's not. The drugs we have now are so much better and our lifestyles so much more adaptable. For example, I work with someone who has to organise an exam for junior doctors and they have to find a patient with rheumatic damage to the hands for the examinees to identify. Half the points awarded for this patient is mentioning that this is rheumatic damage before certain drugs were discovered because you do not see it now.

Best of luck, I hope you don't feel too down and can somehow see this as the beginning of the end of your symptoms and not a life sentence. Hope you feel better soon.

cakeywakey Thu 19-Nov-09 19:57:36

Hello Joanne427, am so sorry to hear about your diagnosis. I have early-onset RA and was diagnosed at 32 after I finished breastfeeding my DD.

When I was first diagnosed, I was in excruciating pain. It affected all of the joints in my hand and feet and also affected my legs and arms. Just knowing I was going to have to walk up the stairs was enough to make me cry and the pain of doing up the poppers on my DD's vests would bring tears to my eyes. I was virtually housebound as it was painful to walk and I couldn't really drive.

That was in the May of 2008 and I was put on Salazopyrin which takes three months to kick in. I was put on it because you can still conceive and breastfeed while taking it if you need to. Steroid injections helped temporarily as did Diclofenac Sodium.

My employers were fantastic (I was on mat leave at the time), sending me to occupational health who looked into different ways to make working for me easier - including speech recognition software for my PC.

Fast forward to October 2008 and the drugs well and truly kicked in. I didn't need any special software or treatment and was just as I was before developing RA. I can do everything I did before May 2008 and am very confident of being able to control any future flares.

I've now come off my drugs temporarily to TTC DC2, but I could have stayed on them if needed. Pregnancy should keep any inflammation at bay, but I'll probably have a flare-up afterwards, but I know it will only be temporary.

I'm sorry this is long, but wanted to reassure you that the way RA is making you feel now is not how it's going to be for ever. The fact that you've been diagnosed quickly is one of the key ways that you can reduce dmage to your joints. It's very frightening when you first find out, and when you're told about the worse-case scenario of a wheelchair.

I would second everything that Wallydoodle has said to you - everyone is different, but there are plenty of different treatments now for RA and hopefully it won't take too long to find the one that works for you. I'd also point you to the National Rheumatoid Arthritis Society www.rheumatoid.org.uk/ and the Arthritis Research Campaign www.arc.org.uk/

You may also find this complementary therapies report from ARC useful, not much for RA, but I found it useful and take fish and evening primrose oil supplements as well www.arc.org.uk/arthinfo/patpubs/6300/6300.asp

Good luck, I hope that you are back on top form sooner rather than later smile

cakeywakey Thu 19-Nov-09 20:02:00

I feel a bit silly now, because the penny has just dropped that this is an old thread blush.

What the hell though, I hope that anyone else reading finds the info useful and that JoAnne427 is doing well out there and feeling well.

smartmars Thu 19-Nov-09 20:05:10

OP, so sorry to hear about your diagnosis. My MIL has RA, diagnosed about 30 years ago and she is not a wheelchair user, despite great advances in treatments only recently. My husband was diagnosed with it 3 years ago (at 29), now re-diagnosed as psoratic arthritis (similiar). there are some amazing tretaments out there, and so much info. Oily fish twice a week is a must btw! don't despair, it may be very controllable. thoughts are with you x

smartmars Thu 19-Nov-09 20:05:56

blush too

smartmars Thu 19-Nov-09 20:07:38

hi cakeywakey, good luck with your upcoming pregnancy!

cakeywakey Thu 19-Nov-09 20:24:38

Thank you smartmars, am trying not to count my chickens beore they hatch, but hoping that all will be well smile

smartmars Thu 19-Nov-09 20:47:57

hey, as we have a secret corner of this vast website, can I pick your brains, re medication and ttc...?

cakeywakey Thu 19-Nov-09 20:50:40

Ooh, not sure I'll be able to help much, but go on, try me.

smartmars Thu 19-Nov-09 20:59:36

thank you. first, sorry to hear of what a hard time you'va had. it's such a ghastly disease. DH is on Humira (injections) and metho (to prevent H being blocked by immune system) as well as anti inflamitories (sorry, sp). we are going to ttc our 2nd child next year but he is understandably anxious about coming off meds. steroid injections seem to be getting less effective and he has been advised to come off metho for 3 months prior to ttc. I see you were on Salazopyrin, whcih I haven't heard of, and could conceive on it - what does it do in terms of how does it work,if you know (in absolute laymans terms if you pleasesmile), it obviously worked well for you. wondered if DH could switch to it instead of bein gon nothing. it took 1 year to conceive ds and that will be too long to be off meds. Sorry, long!

cakeywakey Thu 19-Nov-09 21:12:09

It's exciting planning to concieve isn't it, RA is a bit of a bump in the road though. Sorry to to hear that steroids are becoming less effective for your DH, I can understand his worry about coming off his meds.

Salazopyrin is the brand name - the drug name is sulfaslazine. I'm on it because you can still concieve (but also because it's cheap as chips for the NHS).

Unfortunately, according to the Artritis Research Council info, in men 'it can cause a fall in sperm count, and so can lead to a temporary decrease in male fertility, but this is reversible on stopping the drug.'

You can find out more about it here: www.arc.org.uk/arthinfo/patpubs/6252/6252.asp

Sorry, that's probably not much help. Has your DH's rheumatologist made any other suggestions? It might also be worth calling the Rheumatoid Arthritis Society helpline on 0800 298 7650 (Monday to Friday between 9.30am and 4.30pm). Hope they can help you and hope that all goes well when you start TTC smile

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