Hello Everyone

AvadaKedavra

Hello Everyone!

This seems like a great forum, Which I hope to share my story with and hear your stories too. I am 26 (male) and was diagnosed at the ripe old age of 12 with RA. My mum says as a child of 6 years old, I complained about pains in my joints. She did actually take me to the doctors several times. However, the pains were dismissed as nothing to worry about. My mum still says to this day had they done a blood test on me, which my mum requested, they would have seen the inflammation in my blood etc. I really don't think it would have made a difference anyway, in terms of treatment.

Life is great when you appreciate it properly. I can't say that I always do, not least because when my RA flares up it is so painful. I am sure you all know the symptoms. My shoulders seem to affect me the most, probably because people use their hands and arms frequently I guess. Although, sometimes it's the small things like fingers, toes, and edge of the foot that cause the most pain.

I had one Rheumy appt 5 years ago which was interesting, they gave me the usual info and treatment advise. I decided not to actually go forward with anything new, and simply stuck with the Naproxen I had been prescribed several years ago. I take Naproxen occasionally; it reduces the inflammation well.

I am sorry this is quite a lot longer than I planned . I will just finish by talking about diet. I have tried many diets in the past, in the long-term I have learned just to eat less food. Except, I do pig out once a week . I like coffee but have cut down, I enjoy green tea which helps ease my RA symptoms . I would love to hear about your stories, especially anyone in the same age-range as me.

Thanks for reading.

stickywicket

Hello Avadekedavra and welcome to the forum. My story has some similarities to yours in that I was deemed to have a long spell of what they then termed 'rheumatic fever' aged eleven and was officially diagnosed with RA (Well, Stills Disease) aged fifteen. I had to manage on aspirin/anti-inflammatories/steroids for years. Gold injections helped but i developed the 'gold rash' which meant they were affecting my kidneys so I had to come off them. Thank God for DMARDS! For years I got some control with penicillamine and now a combo of methotrexate and hydroxychloroquine.

I think your Mum is right in that, if you'd had the blood test, you'd have been offered the proper treatment. If you're currently only taking naproxen I'd suggest you re-consider the rheumatologist's advice. Nap will help deal with the inflammation but won't slow down the progress of the disease.

As for diet, Arthritis Care have a booklet on Healthy Lifestyle. Why not check it out?

I'm, alas :roll: , nowhere near your age range but we do have quite a few younger people on here. It tends to be quiet at weekends but I'm sure some will be along.

barbara12

Hello AvadaKedavra
And a warm welcome to the forum..
I have OA but I remember well the doctor saying growing pains...even today I am not sure it is OA but Arthritis is so complex...I agree with SW that you should see a rheumy again just to get more help and advice.
Don't apologize for the long post I find that it really helps to talk about things..you will find lots of info on the forum and best of all we all support one another

suzygirl

Hi and welcome to the forum. I am also a little bit older than you :oops: . I am on immuno suppressants and wouldn't have a better quality of life if I wasn't. I have SLE, secondary Sjorgens, sticky blood, OA and a host of other boring conditions. I hope you can get advice support and fun from the forum, we do have some younger members.

Obviously diet and exercise are important in arthritis, as are meds. I hope someone does regular bloods and checks your progress as these diseases are complex.

I haven't tried green tea yet but my son has decided he wants to try it, so I may do so. I am currently drinking hot water with a slice of lemon!

bubbadog

Hi, welcome to the forum, I was in the same boat as you. I was a teenager when I started having problems, my leg would give way and I ended up not being able to do P.E at school!! I had a choice of what subject I could have an extra lesson of. The Dr's said it was 'growing pains' and it would stop one day. But yes it carried on! I was given so many different diagnosis's it mad my head spin!! But it wasn't till I changed G.P who arranged a bone scan that I was diagnosed with Osteoporosis (shocker!) and since then I have been diagnosed with R.A as well. A bit different from growing pains hey!!

villier

Hi AvadaKedavra

Welcome to the forum, you are like a lot of the others that were not diagnosed till they were older, my sympathies to you, I cannot advise anything as it is OA I have but can help with the support bit. I hope to see you around...............take care.................Marie x

AvadaKedavra

Thank you for the replies everyone, I will take a look at that diet info thanks! Most of the time, my problem is that I know the right and wrong foods. I just cannot stop myself from eating the wrong ones :? . There will I am sure be some new information I can learn about diet though.

I just remembered, when I was around 16 I had an injection in my wrist. The doctor claimed it would reduce the swelling (as I had a painful flare up), I remember it worked a treat! I currently have a very swollen middle finger (random).

It sounds like you all at one point or another have had some difficult periods with your respective conditions. It can be very depressing at times; However, I have learned to manage this. Some people (I have read other posts) talk about how friends and family members, cannot relate to their RA or other types of arthritis. Unfortunately I can agree with this for the most part.

I generally do not like to tell friends and family if there is something wrong, I find it hard to express myself to people. I have improved slightly, but I think I am just inherently quiet. Some people confuse being reserved with being short of confidence, in my case I am fairly confident but reserved. My wife once put on Facebook (which I use occasionally) That she hoped I felt better, this was during a severe flare up I had. The issue was she mentioned my RA and I told her to remove the status. Thinking back it sounds silly of me, but I just don't like people knowing.

It may stem from the fact that, when I have told people in the past (Very few people) they generally compare it to their general aches and pains, Now, I don't doubt that general aches and pains hurt, of course they do! However, It is not the same as RA & other arthritic problems. I suppose it comes down to lack of awareness. To be honest if I didn't have RA, I would not know the 1st thing about it LOL, so I can understand peoples ignorance.

I have found a phone number to request a claim for PIP I believe it's called, It is worth a try. Some days I really struggle to get out of bed on a cold morning to do the school run. I feel so lazy but RA makes your body feel lethargic, heavy and stiff. Sometimes I struggle with the simplest of tasks, changing a nappy, making tea and throwing my kids on the sofa (Ok the 3rd one is optional ). So I may qualify for the lowest allowance If I am lucky.

Like most people I am sure, I have worked since the tender-age of 12 (If you include my paper-round ). I have up my job in march this year to enable my wife to work a job she wanted. My employer was not very flexible so I was left with little choice, I had to leave or my wife would not have been able to work this new job. I am now a full-time dad and love it. I will have to find work soon though when my 17 month old goes to nursery.

Thanks for reading

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. I have an auto-immune arthritis which has led to OA which, in its turn, has led to fibromyalgia. Not the best lottery to win, methinks.

I tried the diet thing, the supplement thing, the homeopathy thing, the wearing of magnets thing and a few other things beside but I have concluded that the best help is the meds thing. It doesn't do all I would wish but that matches my 54 years' experience of life. DD

dippydoodah

hi and welcome to the forum. ive been here a while but disappeared for a bit and have just returned. you couldnt find a better bunch of people.
im also an RA sufferer, along with a history of OA and fibromyalgia. im also on naproxen. they tried me with diclofenac but it didnt work. naproxen seems to work ok (i certainly notice if i miss any tablets!). theyve also tried me on two different RA drugs but neither of them have been successful.

i understand completely about how tired and drained you can feel. its really hard and hard to predict as each day can be so different.

hope you feel welcome and find good luck with your PIP application. i applied for DLA a few years ago and was lucky enough to be awarded on my first attempt but i did ask the CAB to help, they were wonderful.

anyway, welcomes

DebbieT

Hello & welcome,

I'm 43, my oldest of 4 chilren is 25 so I can relate to ure age as she's nearly 26 & I once was that age too ... Many moons ago I have 2 Grandchildren, Mason 3 yrs & Amelia 16 days old so can relate to throwing of kids onto sofas or beds Not the baby I hasten to add :shock:

I have Psoriasis, Psoriatic Arthritis, Fibromyalgia an interesting 1.5cm cyst in my brain & some other problems. I have to ask you something ......
Why on earth are you only on Naproxen? There are some great meds out there to treat auto immune arthritises!! I suppose being in a massive amount of pain myself at the moment I can't quite understand ure decision, I do of course understand if you tell me to keep my nose out etc or don't wish to say at all, I'm just fascinated!!

Diet is a huge problem for me too :oops: I can't seem to enjoy food, I'm lucky if I eat 1000 calories per day & as my life is so sedentary my body is constantly in starvation mode :? I was taking Pregabalin for a couple of years & gained about 4st, I haven't been able to lose it so I'm morbidly obese. I hate it but I feel rather defeated by it at the moment.

Have you tried to claim ESA (Employment Support Allowance)? If not I'd definitely try to claim it & yes definitely claim Personal Independence Payment (PIP) & don't be afraid to get ure Dr/Consultant to do you a report of how bad you are!! I'd ask CAB to help you with both applications. Ure MP can help if you contact them if ure refused. I receive highest rate in mobility & care for DLA, I haven't been thru the change over yet!!

It's lovely to 'meet' you.

Take care.

Xx xX

AvadaKedavra

Thanks for the warm welcome. Yes it is very tiring sometimes but not everyone understands the condition, sometimes I get a dirty look from in-laws for example if they hear I took an afternoon nap.

Please don't hesitate to ask me anything. I suppose I have always seen drugs as a last resort, hence taking just naproxen occasionally. I will be more open though when I have my rheumy appt in the next few weeks I hope.

I will be very happy if I got accepted for PIP, any extra money would help, especially as we could maybe put the heating on or water on sometimes to help us through this winter. Thanks for the advice.

I bet you have your hands full there then, I feel bad sometimes when I can't throw the kids on the sofa etc lol, but I have to accept for now atleast, I can't always do it.

I really have been waiting for some kind of break-through in RA treatments, I'm not holding my breath though. I really hope there is one in the near future.

DebbieT

Do apply for ESA too, you left work thru illness so I think ure entitled & I believe it doesn't matter if ure partner works. Do you claim child & working tax credits also?! All these things are definitely out there, I think a chat with Citizens Advice Bureau is defo worth it!!

I asked about the lack of meds as ure RA will be causing permanent damage to ure joints etc Naproxen will of course help with inflammation but it won't help to slow the damage like. Disease Modifying Anti Rheumatic Drug (DMARD) or Biologic would!! I suppose as we all seem so intent on damage control I'm taken aback that a young un, like herself , isn't even more concerned I suppose!! Hope that makes sense?lol

I have a very judgemental Mum, my Dad passed away recently & she's seen me daily on good, bad & hidiously bad days, it's seems that has finally opened her eyes to how bad I am like nothing else has. I empathize completely!! Have you tried printing off 'The Spoon Theory' & ' There's a Gorilla in my House'? They are both quite good aids to open the eyes of the uneducated & judgemental family or friends you may have

I've had my hands full for quite a while ... I married the boy next door wen I was 17 & he was 19, we've been married since Oct 87 we'd had all 4 children by the time I was 24 & the plan was we'd be fairly young Grandparents, god willing, so we could take them on holidays & days out etc etc Things did turn out that way BUT my hubby became disabled aged 34 thanks to Neurologists using meds they shohldnt have together & I got worse wen I turned 40 the year our 1st Grandson was born. That, more than the pain etc is the most upsetting thing. So we've built a park in our back garden. Ha ha We''re trying to adapt

Omg, I don't shut up .... So sorry!! :oops:

Xx xX

AvadaKedavra

DebbieT wrote:

Do apply for ESA too, you left work thru illness so I think ure entitled & I believe it doesn't matter if ure partner works. Do you claim child & working tax credits also?! All these things are definitely out there, I think a chat with Citizens Advice Bureau is defo worth it!!

I asked about the lack of meds as ure RA will be causing permanent damage to ure joints etc Naproxen will of course help with inflammation but it won't help to slow the damage like. Disease Modifying Anti Rheumatic Drug (DMARD) or Biologic would!! I suppose as we all seem so intent on damage control I'm taken aback that a young un, like herself , isn't even more concerned I suppose!! Hope that makes sense?lol

I have a very judgemental Mum, my Dad passed away recently & she's seen me daily on good, bad & hidiously bad days, it's seems that has finally opened her eyes to how bad I am like nothing else has. I empathize completely!! Have you tried printing off 'The Spoon Theory' & ' There's a Gorilla in my House'? They are both quite good aids to open the eyes of the uneducated & judgemental family or friends you may have

I've had my hands full for quite a while ... I married the boy next door wen I was 17 & he was 19, we've been married since Oct 87 we'd had all 4 children by the time I was 24 & the plan was we'd be fairly young Grandparents, god willing, so we could take them on holidays & days out etc etc Things did turn out that way BUT my hubby became disabled aged 34 thanks to Neurologists using meds they shohldnt have together & I got worse wen I turned 40 the year our 1st Grandson was born. That, more than the pain etc is the most upsetting thing. So we've built a park in our back garden. Ha ha We''re trying to adapt

Omg, I don't shut up .... So sorry!! :oops:

Xx xX

No not at all, we all need plenty of words to express ourselves. I will defo have a look for those RA awareness books LOL at their names very good. WOW so you have 4 kids! I have 2 and find it hard sometimes. Like you me and wife conceived early, our first was born when I was 19 and she was 21. I suppose young parents are better in some ways, especially when it comes to physical aspects, although I sometimes feel twice my age .

It must be very hard when losing someone so I really feel for you there, fortunately I have not been in that position yet, my wife lost her Granddad in April this year, that was her 1st bereavement and hit her hard. Of course she still breaks down occasionally.

I will defo be ringing the PIP phone number tomorrow, about three-weeks ago I saw my GP. He referred me once again to rheumy, Called them friday gone for an update as still no letter. The receptionist said she could see nothing on the system, disappointing, I have to call in tomorrow to see what is happening.

These disease mod drugs sound good in theory, I just don't like the look of the side effects, but they come with every drug. I suppose it will be easier to make a decision once I see a rheumy doc. I really want to see them to see how I am, I don't really know where the disease is at, if you get me? Because the last rheumy appt I had was in 2008.

Starburst

Hello Avada,

Welcome to the forum. I'm interested in how you manage your RA without treatment such as; DMARDs and biologics. Do you know if you have any joint erosions? I find the side effects of the meds so difficult to cope with but have had joint damage so don't see any other choice at the grand ole age of 25!

Anyway, welcome again!
~ Sophie

AvadaKedavra

Starburst wrote:

Hello Avada,

Welcome to the forum. I'm interested in how you manage your RA without treatment such as; DMARDs and biologics. Do you know if you have any joint erosions? I find the side effects of the meds so difficult to cope with but have had joint damage so don't see any other choice at the grand ole age of 25!

Anyway, welcome again!
~ Sophie

Thanks Sophie, yes we are old aren't we! Especially you being 25 LOL. I really don't know anything about my joints :shock:. I wish I did though. I just grin and bear it, although I do not deal with it all too well. I get snappy and irritable which is not good. I take naproxen occasionally when it all gets too much, not that often though.

When was you diagnosed? If you don't mind me asking.

Mat48

Hi. I've just read this thread and find it rather amazing that you haven't opted for the conventional RA meds. I'm 50 and was diagnosed with RA a few years ago and now have added autoimmune stuff going on.

When I was your age - many moons ago - I had the most awful eczema. Now my oldest of three sons has the same and he really struggles with it. He's also mildly autistic and that doesn't help because he doesn't take good care of himself regarding food etc. He lives far away and is in his last year at uni and I worry about him a lot. My husband was telling our youngest son (16) tonight that I used to be pretty much as bad. I never took big meds for it even when it got infected and really nasty - I would just smother a bit of old, out of date Betnovate on it and take an antihistamine to help me sleep. Would wake up in the morning to what would looked a blood bath :shock:

My youngest is presently taking a very strong drug for acne and he was saying that if our middle boy had been on this drug he wouldn't be stuck on much less effective, longer term meds for acne now and wouldn't have scarring on his face now either. This prompted my husband to say that if I'd been more proactive about my health at a young age I then I may have got on top of the eczema much sooner. My eldest was more or less scratched out of me two weeks before he was due because there wasn't an area of my body that wasn't caked in wounds and scabs throughout that first pregnancy. I doggedly refused steroids that I was endlessly offered throughout my first pregnancy and regret this now. Didn't suffer in this way with the next two pregnancies thankfully.

What I'm trying to say is that if you decide to adopt the aggressive approach that doctors now recommend with RA - and stamp it out as much as possible - then perhaps your middle and older years (when kids are teens!) will be more pain free for taking this action when while you are still much younger and fitter?

Inicidentally I took Methotrexate for 19 months after diagnosis but stopped because of side effects and because I felt I was self-harming and that my RA didn't need this heavy duty drug. Four months later I've ended up on high dose steroids for a month followed by a a few days of Naproxen and am now back on another milder DMARD too. Naproxen works really well for me when I occasionally take it but makes my uticaria (recently diagnosed) flare up horribly. But my RA seems to have gone into hiding from the period of time on Methotrexate though and I feel very grateful to it on lots of levels. If the pain returns I will take something more powerful again without hesitation (well only a bit anyway :oops: :roll: )

Even Naproxen has side effects and, taken long term, carries risks too. So surely it is better to take the stronger meds and try and get your RA well controlled? There are plenty of very different drugs so if you react badly to one there are others that might be brilliant and mean that you can throw kids onto the sofa whenever the play fighting spirit takes you both?! :roll:

Sorry this is so long - I hadn't meant it to be but just wanted to tell you my own drug/ kids story in case it helps you decide what to do next.

AvadaKedavra

Mat48 wrote:

Hi. I've just read this thread and find it rather amazing that you haven't opted for the conventional RA meds. I'm 50 and was diagnosed with RA a few years ago and now have added autoimmune stuff going on.

When I was your age - many moons ago - I had the most awful eczema. Now my oldest of three sons has the same and he really struggles with it. He's also mildly autistic and that doesn't help because he doesn't take good care of himself regarding food etc. He lives far away and is in his last year at uni and I worry about him a lot. My husband was telling our youngest son (16) tonight that I used to be pretty much as bad. I never took big meds for it even when it got infected and really nasty - I would just smother a bit of old, out of date Betnovate on it and take an antihistamine to help me sleep. Would wake up in the morning to what would looked a blood bath :shock:

My youngest is presently taking a very strong drug for acne and he was saying that if our middle boy had been on this drug he wouldn't be stuck on much less effective, longer term meds for acne now and wouldn't have scarring on his face now either. This prompted my husband to say that if I'd been more proactive about my health at a young age I then I may have got on top of the eczema much sooner. My eldest was more or less scratched out of me two weeks before he was due because there wasn't an area of my body that wasn't caked in wounds and scabs throughout that first pregnancy. I doggedly refused steroids that I was endlessly offered throughout my first pregnancy and regret this now. Didn't suffer in this way with the next two pregnancies thankfully.

What I'm trying to say is that if you decide to adopt the aggressive approach that doctors now recommend with RA - and stamp it out as much as possible - then perhaps your middle and older years (when kids are teens!) will be more pain free for taking this action when while you are still much younger and fitter?

Inicidentally I took Methotrexate for 19 months after diagnosis but stopped because of side effects and because I felt I was self-harming and that my RA didn't need this heavy duty drug. Four months later I've ended up on high dose steroids for a month followed by a a few days of Naproxen and am now back on another milder DMARD too. Naproxen works really well for me when I occasionally take it but makes my uticaria (recently diagnosed) flare up horribly. But my RA seems to have gone into hiding from the period of time on Methotrexate though and I feel very grateful to it on lots of levels. If the pain returns I will take something more powerful again without hesitation (well only a bit anyway :oops: :roll: )

Even Naproxen has side effects and, taken long term, carries risks too. So surely it is better to take the stronger meds and try and get your RA well controlled? There are plenty of very different drugs so if you react badly to one there are others that might be brilliant and mean that you can throw kids onto the sofa whenever the play fighting spirit takes you both?! :roll:

Sorry this is so long - I hadn't meant it to be but just wanted to tell you my own drug/ kids story in case it helps you decide what to do next.

Thanks very much for your reply!

You speak a lot of sense, I feel very bad for you and your son regarding eczema. Fortunately I have only suffered mild eczema and asthma as a child. My mum however has the worst eczema possible, it's all over her body and she has had deep cracks in her hands for years, must be terrible. Also my 17 month old son has severe eczema. Some months it's relatively well controlled but when bad, his clothes and sheets are also, like a blood-bath.

You're spot on though, getting things sorted early is paramount with RA or when I am 50 or even younger than that, I will suffer greatly. I just have such a negative attitude toward these invasive drugs. It would be great if they did work with minimal side-effects, but who knows?

I suppose to be brutally honest, Like many others I am waiting (begging more like) for a break-through in RA treatment. This will probably come when it is too late for me, but I hope it does come. I read a short article the other day in-fact, about a break-through in RA research. It sounded promising, but, I didn't read too much into it.

Mat48

I totally understand where you are coming from re meds and side effects. I have had all these thoughts - still have them - and would have had them with knobs on if I had suffered RA at a young age as you have.

But perhaps you should try and see it differently? For rheumatologists these drugs were and still are the big breakthrough - especially the Biologics. Any future breakthrough will likely be drug related I feel and it's important to recognise that Methotrexate has revolutionised RA treatments for many. I know of people who have got their life back to relative normality and freedom from pain because of it. Same goes for the Biologic drugs - even more so in fact but you have to have tried Methotrexate and another DMARD usually before these become an option.

I don't want to scare you but RA is a terribly destructive disease and if the drugs keep it at bay and prevent it from damaging your joints and even your internal organs in later life then surely this makes them worth risking some side effects for? Especially when you are a young parent.

AvadaKedavra

Mat48 wrote:

I totally understand where you are coming from re meds and side effects. I have had all these thoughts - still have them - and would have had them with knobs on if I had suffered RA at a young age as you have.

But perhaps you should try and see it differently? For rheumatologists these drugs were and still are the big breakthrough - especially the Biologics. Any future breakthrough will likely be drug related I feel and it's important to recognise that Methotrexate has revolutionised RA treatments for many. I know of people who have got their life back to relative normality and freedom from pain because of it. Same goes for the Biologic drugs - even more so in fact but you have to have tried Methotrexate and another DMARD usually before these become an option.

I don't want to scare you but RA is a terribly destructive disease and if the drugs keep it at bay and prevent it from damaging your joints and even your internal organs in later life then surely this makes them worth risking some side effects for? Especially when you are a young parent.

Yes I am sure you're right! I am sure between the Rheumy doc and yourself I will be persuaded . I really hope to get an appt before xmas but who knows. I really am thinking about at least trying something that us out there. At least then I can say I've tried! Thank you.

Mat48

Best of luck! X

Starburst

Avada, I do understand where you're coming from with the drugs. My disease is finally sort-of settling down after 4 years of various treatments, I'm on a fair bit right now; 2 DMARDs (Methotrexate and Leflunomide) and an anti-TNF (cimzia).

I have to say that it's a very bitter pill to swallow having side effects that are - right now - worse than my current symptoms! I've traded off aggressive RA for vomiting, headaches and being immunosuppressed and all the joys that come with it.

People do say that it's about finding the right drug combo but starting new drugs is a big decision and for me, managing my side effects appears a better decision than trying another barrage of drugs.

It's a delicate balance and weighing up the pros and cons is very individual. In my opinion, either way - meds or not - this condition is very difficult to live with and to accept.

That's my ramble over!

AvadaKedavra

Starburst wrote:

Avada, I do understand where you're coming from with the drugs. My disease is finally sort-of settling down after 4 years of various treatments, I'm on a fair bit right now; 2 DMARDs (Methotrexate and Leflunomide) and an anti-TNF (cimzia).

I have to say that it's a very bitter pill to swallow having side effects that are - right now - worse than my current symptoms! I've traded off aggressive RA for vomiting, headaches and being immunosuppressed and all the joys that come with it.

People do say that it's about finding the right drug combo but starting new drugs is a big decision and for me, managing my side effects appears a better decision than trying another barrage of drugs.

It's a delicate balance and weighing up the pros and cons is very individual. In my opinion, either way - meds or not - this condition is very difficult to live with and to accept.

That's my ramble over!

Argh I have sympothy for you and everyone else with RA. I appreciate your story, some days my RA is quite manageable (pain wise). Some days it really hurts and gets me down, but accepting it is important. And making sure others such as family accept you have RA, and sometimes may not be yourself.