Desperately Seeking Advice

FleetingRealities

Hi there,
I was wondering if people could offer me some advice and support in dealing with my current situation - anything would be greatly appreciated, as I am struggling to know how to deal with certain aspects of my current situation.

I'm a 34 year-old male who, a year and a half ago, was very fit, very healthy, and very active.

I was recently diagnosed with inflammatory arthritis with an auto-immune response, after a period of a year of investigation. During this time I was, and continue to be, unable to walk properly or do any of my usual activities. This diagnosis was based purely on symptoms (inflammation of joint(s), primarily left knee, inflamed lymph nodes throughout the body, and night sweats being the key symptoms), and raised ESR and CRP levels.

Nobody suspected arthritis until 5 months after I first exhibited symptoms, on the day I was due to have surgery to sort out some meniscus tears, and carry out an arthroscopy. At that time the joint space throughout my knee was fine.

I was offered Methotraxate in Nov. last year, but requested that I be given the opportunity to try self-help for 3 months, then assess things after that. I was doing ok until a series of events caused my knee to be aggravated in the middle of Jan, and things spiralled out of control. I saw my rheumatologist again about 3 weeks ago, and accepted the Methotrexate this time (15mg with 10mg Folic acid, along with 2 month's worth of steroids in pill form to tide me over until the Methotrexate hopefully kicks in). Things have stabilised a bit over the past 3 weeks, but there are still peaks and troughs. X-rays were taken when I was put on the Methotrexate, and I obtained a copy of them and the report. They indicated that I had a complete loss of joint space in the lateral compartment of my joint, and between the patella and the joint. This came as quite a shock to me, and was very distressing, as I had no idea such a thing was likely in such a short space of time (10 months since my last x-ray, where no loss had occurred).

What I would really appreciate receiving advice on is:

- Should the GPs have investigated things sooner? They failed to consider arthritis despite all the symptoms being present, delaying initial diagnosis by 5 months. Should I pursue some course of legal action, as I now have permanent damage?

- Has anyone been able to successfully reduce and then eliminate the need for Methotraxate through self-help (reduced stress, improved nutrition, etc)?

- Has anyone successfully found the cause(s) and trigger(s) of their arthritis, and how did you go about doing this?

- What are people's experiences for treatment for the loss of cartilage? At what point during your treatment for arthritis did you have surgery carried out? How has life been afterwards?

I realise these are all very big questions, and possibly best split into separate posts, but I hope people will be able to offer advice on one or all of them.

Lastly, I just want to say that I wish each and everyone one of you all the luck in the world in your attempts to deal with and overcome the issues you are experiencing due to arthritis - this has been one of the darkest periods of my life, and I know the journey has only really begun.

Thank you in advance for your advice and support, and I look forward to discussing the above queries.

Take care.

tjt6768

Hi FR...
Welcome to the forum, I am not on the same meds so can't really advise but some knowledgable soul will come along in time.. We are a friendly and experienced bunch..
I am just on my way out but wanted to say I hope things aren't too bad for you today.. Both my knees are pretty bad at the moment and I am lumbering around on crutches or two sticks with the grace of Bella Emburg on ice, in a snow storm, after ten pints.. :shock:

Be well, catch you soon

seamonkey

Hi and a welcome from me too. Those are quite 'big' questions and im sure somebody will be able to help you with meds etc, i just wanted to say that i have been waiting for 12 years for some type of diagnosis, only been this past 4 months or so that docs have said arthritis. I was angry and frustrated at first that things hadnt been picked up on sooner etc and wanted to be angry and lay the blame at someone. As time has gone on though i realise that it can take a long time to diagnose as others on here are testimony too. No point me using up what little energy i have focusing on things that have been and gone, i need all the energy i can get to manage day to day.
I hope you find answers soon there are lots of helpfull folk on here who have tried all sorts of things, what works for one may not work for others.
Wishing you all the best,
seamonkey

dreamdaisy

It would appear that you have an auto-immune version of this dross, has anyone suggested RA? (rheumatoid arthritis?) There are so many variations of arthritis and related conditions (about 200 I believe) but I will base my answer on that assumption - pluis the fact that you are on meth and FA.

Arhtritis can be a slow and creeping beast or it can have a go at one with all guns blazing. You may well be falling into that latter category but I don't know as I am not a doc. Right, your questions.

1. I think that a delay of only five months between initial symptoms and diagnosis isn't too bad and the fact that you are starting the meds now should (hopefully) mean that they stand a better chance of slowing things down for you. Arthritis does not go away, it does not get 'better' as such (although its worst symptoms can be substantially relieved by the right meds and pain dullers). As to suing someone, well who? God? Auto-immune diseases are one of life's little surprises and a such there is not much one can do about them. I had five years of being told to go away - 'It will all get better'. I did and it didn't. Inflammation in the body can be caused by all sorts of things and given your comparative youth I suspect arthritis was last on anyone's list (even in the medical profession there is still the idea that arthritis happens to older people. It doesn't - our youngest affected person is 2 years old.)

2. As to reducing the needs for the drugs well, if you find a way please tell us! I have not found that diet makes any difference to my symptoms, neither has exercise (it exacerbates things in my case). Stress can aggravate arthritis - it feeds on it, sometimes creating a lovely vicious circle. Mind you, I could be lying on a beach in the Bahamas, having every need attended to, £6 million in the bank and surrounded by gorgeous young men - and I will still be in pain. 'Tis the nature of the beast.

3. The cause and trigger of my version of arthritis is my crappy genes, so lovingly passed down from my parents. Bless. Both sides of my family have a history of auto-immune problems which skipped my parents and gave me a double dose. There is an inherited aspect to this business but sometimes it will just begin - is anyone else in your family affected?

4. I have no idea whether I have lost cartilage or not. I started with one affected joint and I have continued to add to that total over the past 14 years. I have PA (psoriatic arthritis), it is similar in some respects to RA but comes with the added bonus of some truly weird skin (I am lucky in that I don't get that to often). I think with mine the major damage is in the area surrounding the joints, my bones are actually beautiful. The docs ignored my rapidly growing left knee for five years - by the time I was under the knife to remove solidified synovial fluid and other gunk my knee was a mighty 27" round! The meds I take do have an effect but nowhere near what I would like. C'est la vie.

This must be a huge shock for you as it sounds as though you have enjoyed good health up until now. I have no idea what good health feels like but if you are only troubled with the one joint so far then that is not too bad - but for you even one joint is one too many, which I can appreciate. I hope the meth etc does help: don't enjoy the steroids too much, they are delightful little pills, very helpful to one, sometimes too helpful. Get off them as soon as you can and resist the temptation to take them again! I wish you well. DD

traluvie

Hi FR,

I am 31 with 2 children and recently been diagnosed with RA/OA..
It is a tough battle and an uphill strain, but hopefully with support from others(we are a great bunch .. honest ) and understanding it will be easier..there are days when things get on top of us and we will feel real low.. We are only human and unfortunately we can't be perfect lol..

In regards to your questions i am unable to help..
I do know that some people have waited a long time for a diagnosis.. i have been one of the lucky ones.. i am just grateful i have a diagnosis and can now be treated accordingly..

I hope someone can come along and offer you some advice regarding your questions, hope it may be of some help for you..

Look forward to seeing you around, keep us posted..

dreamdaisy

I forgot - now you are on meth please enquire about having a flu jab. As meth compromises one's immune system it leaves you vulnerable to infections so it is important that you have this done. Meth is supposed to help the arthritis by slowing the production of new cells by the immune system thus reducing inflammation. The FA, on the other hand, is given to support cell renewal.

I have re-read your initial post and am now somewhat muddled about the length of time it took for a diagnosis - even so I think you have been dealt with fairly rapidly and they have established what is going on. DD

stickywicket

FleetingRealities, I wish I could give you the sort of help you’d like most – a magic wand to banish this nightmare you’re caught up in. I have sons of a similar age to you who are also ‘very fit, very healthy, very active’ and I know how devastated they would feel to be in your situation. In answer to your questions:

Legal action? That would be up to you but my own view would be that, as DD has already said, it can be a tricky thing to diagnose and, as Seamonkey has said ‘No point me using up what little energy i have focusing on things that have been and gone’.

Cause & trigger? No idea. I have auto-immune RA. No-one else in my very extensive family has had it. Trigger factors – stress, raised temperature, doing too much, doing too little, I am better (than before, not better) since I stopped eating meat but only if I ensure a balanced diet. I discovered this through years of trial and error (mostly error) and grasping at all sorts of ultimately disappointing straws. At the end of the day, much as we would wish it otherwise, arthritis is a fact and we have to deal with it.

My surgery would be largely irrelevant to you as I was diagnosed in the dark ages when disease modifiers weren’t around. For the record my two hips and three knees have been brilliant.

You are right that ‘the journey has only just begun’. I’m really sorry you’ve had to come here but, trust me, at the end of the day, it’s possible to have both arthritis and a good, interesting, fulfilling life – it just might not be the one you had planned.

julie47

Just popping in to say hi and welcome to the forum.

I hope your meds soon kick in and you soon start to feel a little better.

I just want to say I have had RA for 23 years and in that time have always had to have some form of medication to keep it under control.
In the 23 years my meds have changed as so has arthur.

My RA started a couple of days after having my daughter.
There are alsorts of questions I ask myself as to why????
Could I have caaught some sort of infection.....was it a shock to my system.....who knows.....I do know that no one in my family has this.

It is very hard to accept but with help and understanding from family and friends you will learn to adapt......not always accept it but you will cope.

take care
juliepf x

MissKat

FleetingRealities... SNAP!!!

Hello and welcome, and thank you so much for posting... your post has the resounding familiarity of my post about 3 months ago when I was first diagnosed with auto immune arthiritis.

9 months ago, I too, was a very active, fit and healthy 29 year old. Then, wham and bham... what we thought to be a sports injury, really really was not. Similarly to you I almost had an arthroscopy to investigate further as nothing was showing on the MRI's or xrays, then my other knee flared up literally over night - it was so scary how quickly it happened. This left me pretty disabled, and plunged into what felt like an abyss of the unknown... what the h#ll had happened to me?!

It was about 3 months from my first symptoms (which were a rather big fat red herring) to my second knee flaring up which then led to my Doctor reaching very quick smartish for the phone to arrange an appointment with a rheumatologist.

I began on Meth at the beginning of January, and it's been gradually increased so that at present we are actually on the same dose, the same folic acid, and I've been on Prednisolone since November - which finally is now decreasing in dose now that the Meth is kicking in.

As I understand, and it's a really tricky one to comprehend. Believe me, one of the hardest parts I've found, is getting my head around the fact that actually I'll never know what has caused this. It could be anything in a huge number of things, and as much as I really REALLY want to be able to blame something, to be able to say what caused this to happen... I can't.

In terms of reducing the need for Methotrexate, I have no idea. The way it's been explained to me, but maybe this is an individual case... is that you have to give it a good old try, ie 2 years and see if / how it helps you, then, things can be re assessed. I know. Sucky huh?

I am glad that this forum has brought us together, and hope that some of the above helps you... I've not been a member long, but just knowing that there's people on here who know how you're feeling, and who'll answer your posts no matter how grumpy you are, really is a light in that proverbial tunnel and hopefully we can all help alleviate the darkness that you feel is surrounding you right now

MissKat

rugbygirl

Hi FR

I am sorry that you have had to join this forum but now that you have you will find a lot of support and advice whenever you need it.

I do not have your type of arthur but I have recently been diagnosed. I have been suffering with back pain since August of last year. I was going to the doctors on almost a weekly basis. I couldnt move without pain, I was given painkiller upon painkiller. Different painkillers each time and although the GP said that they would refer me to the physio it never happened. I finally changed surgeries after being told that I couldnt have back pain, a numb lower leg, and problems with my right wrist.

I saw the new doctor and for the first time i was examined. I was asked to certain things and the doctor for the first time said that he suspected a slipped disc. He said that he would refer me to the Ortho specialist and from there I would be sent for an MRI. I finally had my first appointment with the ortho in January and I was sent for an MRI scan at the beginning of February. I have been taking about 23 tablets in total each day and if I dont take them I cant move. I found out 2 weeks ago that I have OA of the spine and I like you was furious.

Why me? Why did it have to happen? Why did they take so long to diagnose. Simple - it is not an obvious disease. They have to run different tests to try and find out what is wrong and if you are under a certain age it is not the most obvious thing to look for. I had a road accident when I was 15 and every time I went to the doctors I asked them could this problem have anything to do with my accident. I was told on many occasions that there is no chance of it being anything to do with that as it was too long ago. The first thing the ortho specialist said to me was that the problems I was having could be down to the road accident I had when I was 15. I didnt even mention it to them.

Like most others on here I have accepted that there is not a lot I can do. I cant sue anyone for not sorting this quicker as it was going to happen at some point. I cant blame anyone because there is no one to blame. Stress is only going to make things worse so there is no point stressing about things.

If you find any thing that helps then please dont keep it to yourself share it with everyone.

At the end of the day there is no point worrying about what you cant do tomorrow, focus on what you can do today. You will learn to deal with things and you will find ways of doing activities that you probably havent thought about. Try not to feel bad about what life has dealt you but face it head on.

Hope you feel a bit happier about things soon

cthornley

Hi
I think DD has prettymuch covered what I want to say but just to reiterate
Theses are a collection of crappy diseases (I have RA ) and to go from young fit and healthy to in debilitating pain is very hard ( I was fine until I caught the flu in my 1st year of uni aged 19.... I'm now 32)
It's an awful lot to get your head round and even start to deal with, biggest challenge is getting diagnosis and then starting treatment, but you have started down this route and found us to keep you company whilst you travel it.
Good luck and keep asking questions, it doesn't take much but has always helped me feel a little bit more in control
Chrissie

skezier

Hi Fleeting realities (I love that )

A welcome to the forum from me as well. Its a good place and it might help you to feel a lot easier about whats happening to you with luck.

Its always hard in the beginning and the time it takes to get a real diagnosis is so long sometimes..... to me you sort of got your quick.... Mine was there and being commented on for a good 7-8 years before it was really looked at. i have advance oa and they just stuck it on that despite the amount of inflammation.

Thankfully i see a rumo for the circulation and actually had the sense to ask him, but not for the first 5 years cus I am stupid.....

Anyway I think your unlikely to get far with how long they took to be honest. Its got time scales on it but maybe talking to pals or Icas would help you to find out for sure?

I was on sulfa, got a huge reaction and it wasn't working so i kinda welcomed mtx to be honest. Up to 25 mg and it was sort of dong a bit but I have eye trouble and didn't read the info sheet and besides I kind of felt I might have side effects, i might not but I did have something eating my bones with no challenge so I took them.

Side effects, some people don't have any, some have a few and some get a bit of a rough reaction but in the last2 cases the gp can and will help with things to balance it out till your body gets used to it.

I think its got to be worth a try cus if you hit it hard in the early stages its so much better for you and can do less damage.

Triggers for me, i don't really know cus mine has never been under control. originally it came in on the back of some real heavy duty stress and upset..... I don't really know if it was connected though as I have 2 other autoimmune things so might have got it anyway.

Self help I do do and a lot of alternative things I have tried. You feel better in your self with the self help but it doesn't make a jot of difference to the bones as such, you do cope better and that's a huge step forward to be honest.

AC run courses of self help things called challenge arthritis and challenging pain I think. It may well be worth you going to one as some of the techniques they teach you are good. You can find out if there is a group near you on the site but I can't remember where, sorry.

There are some download leaflets on the site as well that might help... if you go to about arthritis you should find the link to them.

The bottom line for me has always been how well i am in my self as to how hard this sodding bone thing hits me.

I know in the beginning its all scary, you see your life being taken from you but if you can get it under control you might be surprised at how much you can get back as long as the bones are not damaged. MTX could stop the damage and really only one of the disease modifiers will for the inflammatories. Sadly i got a whole chunk of oa and that has no control and no chance of replacements because of where I got it ands other complications.

I can't help on that one as the only surgery I have had is a few feet re-builds and fusing and a decompression on my back. Both of which helped no end actually. If I could have the joints replaced i certainly would but I make things very complicated cus of my other conditions and the damage the oa has done to me and I can't give up my way of life as yet so replacement are just not strong enough for what i will do to them :roll: Now because of the oa and pa in my spine and neck they are no longer saying about them.

There are a whole load of people here who have had replacements and the bulk have never looked back.

I know just how hard it is in the beginning and how horribly isolating it is as well. Hang in there though cus I promise you it does all get easier and you and it learn your limitations.

my advice for what it is worth take the mtx and with luck it will clobber the bones into line.

Oh loss of cartilage, got that and its ok really....... I do wonder sometimes about having some put back in but they have never offered it so don't know but someone here ( I think it might be J0-Ann) has had her knee done and well so far she says it ok.

She got a post here somewhere and it might be worth you reading it? She might see this and leave you an answer as well.

I have had oa since I was a kid and the pa who knows how long and I do know how hard it can be and how low it can drag you but it does honestly get better. Nice to meet you, Cris x

barbara12

Hi FR
Sorry I cant help with much advice, I just want to say welcome, the support you will get off this forum is brilliant.
Sometimes just talking to people that are going through the same can really help.
Good Luck with the meds
Barbara x

Rashine

Hi

So many good replies seem to have covered most of it.
I first showed symptoms after getting badly chilled (probably hypothermic) when I was on a multiday walking/camping trip on the hills of the Lakes exactly 14yrs ago tomorrow (wow I've jsut realised that!)

It took two years of initially having pain and imobility in one joint at a time before having a full blown flare up where literally every joint was affected before I was diagnosed. I had a very active job at the time and did a lot of hillwalking etc. I was recommended to only take nsaid for the first two years after diagnosis as I was planning on starting a family then got moved onto sulphazalazine then had a breif spell on methox.

However my symptoms have largely stabilized (I am so fortunate) and I am currently not on any meds (not necessarily my Rhemys choice). The key thing for me is avoid all stress, get lots of sleep (that doesn't always work) and keep as active as possible without hurting myself too much. Oh and of course have a huge amount of luck!
In my worst days when my RA was at its worst I honestly thought I was looking at multiple joint replacements and eventually being wheelchair bound, but I have been very luck and still go hillwalking/cycling etc 14yrs on (although I may be having to get my foot operated on this year as it is getting a bit beyond a joke, but I will not let it get me down).

Everyones Arthur is different and you have to find your own way to live with it and deal with it.

keith1971

Rashine, how refreshing to hear somebody with a good story for once -- all the doom & gloom was making my diagnosis seem like a death sentence.

So happy for you -- hoping my own journey with this disease mirrors yours.

;-)

Rashine

Hi keith,

I now how difficult it can be when you are diagnosed. It does all look pretty bleak. I joined a young arthritis support group but started getting down imagining I would end up with everyone elses symptons all rolled together.

I guess one of the reasons I wanted to share my experience with people is that all too often we only here the worst of this awful condition.

dreamdaisy

Hi FleetingRealities, how are things with you today? I hope that all is as well as it can be. DD

FleetingRealities

Hi there,
Thank you to all those people who took the time to welcome me to the forum, and to those who offered me advice and support - I really appreciate it.

I have to say the initial responses had a very negative affect on my state of mind, but thankfully the likes of Rashine shone a little light into the darkness.

The experience motivated me to buy a domain name, which I will post later on once I have actually built the site, and will focus on being/staying positive, along with methods for overcoming all the negative aspects of this disease, and perceiving oneself as a survivor rather than a sufferer. I do strongly believe our mind influences the state of our body, and so intend to do all I can to approach this whole experience in a positive manner - who knows what the outcome will be, but I would rather live than simply exist.

I have been exploring potential ways of minimising the impact of arthritis, and just wanted to share these with you. Below is a list of sorts of the various methods I have come across so far.

Nutrition (Food): reducing/eliminating inflammatory foodstuffs, and increasing anti-inflammatory foodstuffs; trying to reduce the acidity of one's diet; improving the body's ability to absorb the nutrients - you can have a healthy, balanced diet, but if for some reason your body isn't absorbing the nutrients properly then the positive impact is going to be reduced.

I have recently started to see a nutritionist, and while I am a 'healthy' vegetarian, and have been for about 12 years, she has pointed out that while what I eat is great for a healthy person, it is not necessarily providing my body with what it needs now, to deal with the arthritis/auto-immune issues. She also feels that my body is not absorbing the nutrients effectively, if at all, and we are working on a regime to try and get my body what it needs to deal with my current situation and bring back in balance in terms of absorbing nutrients, as well as hopefully reduce pain and improve mobility.

Nutrition (Supplements): there are lots of different supplements to consider that can have an anti-inflammatory affect, are detoxifying or even provide pain relief (e.g devil's claw). Supplements like vitamin C, Aloe Vera, Evening Primrose oil, flaxseed oil, glucosamine (with chondroitin), and many more, may help in achieving some sort of relief and physiological benefits.

I have just found out about another potentially very beneficial supplement today it via a friend whose relatives have benefited greatly from it - Serrapeptase. Has anyone any experience of using this?

Mind/Body Link: Meditation and improved stress management are the obvious ones, but I am currently exploring the power of visualisation, belief and positive thinking ('How your mind can heal your body' by David Hamilton), as well as Epigenetics.

Has anyone any experience with trying to approach dealing with, and hopefully overcoming, the various physical issues associated with arthritis through positive thinking and visualisations? (In a conscious manner, rather than it just being part of your normal character.)

Has anybody out there had any success with other alternative therapies in trying to treat their condition - such as magnetic field therapy?

I hope everyone is having a great weekend, and thank you again to all those people who replied to my initial queries...let the discussion continue!

Take care

tjt6768

Drugs & Smiling for me... And good music, always makes me happy....

dreamdaisy

Cue the Batman theme tune - '. . . . percieving oneself as a survivor rather than a sufferer.' KAPOW! 'I would rather live than simply exist.' OOOOOOF!

As far as I am aware I am living rather than merely existing. Obviously I am somewhat further down this road than you (and, let's face it, probably affected to a larger extent than your good self despite all my positive thinking and other bits and pieces I have tried) but I wish you the very best with your endeavours to beat this pestilence. I have to admire your hubris - I would tentatively suggest that most of us have heard of the things you suggest, and (possibly)tried them. Visualisation is a wonderful technique - but it won't switch off an over-active immune system. Diet may well help some forms of arthritis but not all. Everyone is different in how they are affected and in what does and doesn't work for them. How about ayurvedic medicine? That makes a great deal of sense in some ways - you might find that interesting. As for the Serrapeptase, well surely it all depends on what ailed the rellies. DD

tillytop

A belated "hello and welcome" from me! Sorry so late joining in on this thread.

I think that a positive attitude is a great attribute and I really admire your spirit! And I think that a healthy, balanced diet can only be a good thing, alongside the inevitable meds.
I developed RA when I was 28 (I am now 43) and I still remember how it felt at the beginning and how overwhelming it was (and at times still is) and I am sure that if this forum had existed then I would have felt less alone with it. So really glad you have found us and please do keep posting to let us know how you get on.

Tillyxxx

skezier

Hi Keith,

I get the same thing about diet as i don;t eat meat or fish. I kinda tell em quorn contains much the same but they crack on about second class protein and all that. I still wont eat fish or meat though.....

I have tried to stay positive... I use a huge amount of visualization and for me it actually does help.... more with the past and its shift i guess but it helps with pain.. I kinda ignore it quite well and have the athritisis locked in a hamster ball which for me makes them that bit less powerful....

I do the meditation especially when it really hurts but there are two types and well i use the less conventional......

Does it beat well i got 2 kinds and they are both making big impacts on me so for me its not BUT it has helped me to cope with it so much better than I would have done.

We all find our own way and self help is good but you have to learn what works for you.

Good luck though cus it really can be a useful part of the cope mechanism. Cris x

dreamdaisy

About the magnetic field thing - sturge08 has just had a course of that (at some expense) and was intially disappointed with the results (he has OA of the toe and ankle, so a different beast to RA). OA does have different treatments to the immune-based arthritises - those get the nasty drugs, OAers get anti-inlfammatories and pain dullers. If you do a search on this forum using the term it should bring up his posts about it - there was quite a long thread recently, a conversation between him and a practitioner but I cannot remember when it was around. The search should bring it up. DD