Diagnosed in December and learning to live with the ghost that hides in my body

[Aliced]

So this is my first post. I am somewhat hesitant about opening a window on my life, but having spent some time reading the posts over a few weeks, and discovering the real sense of community on this blog, I thought I would share my story with you, having found comfort that I am far from alone in my diagnosis. I was diagnosed at the beginning of December last year, after the pain and swelling became so debilitating I was struggling to walk, or pick up my six month old baby. I knew something was more seriously wrong than the aches and pains I would usually pick up whilst doing sport. I have always been very active, but was finding it harder to regain full strength, having put exercise on the back burner as I became pregnant with my 2nd child, giving birth in March last year. I started to try to return to my usual fitness regime, but discovered it was much more difficult. I put it down to age and pregnancy.

When I could no longer walk or even get my shoes on I went to the Dr, I went for blood tests, and x-rays, three weeks later I got a call from my GP, my x-rays and bloods were within normal range, including my ESR and CRP. No follow up, nothing, except I still couldn’t walk.

Another week passed and I was surprised to receive another call from my GP. One test had taken longer for the results to come in. My Rheumatoid Factor was over 1500 and I had tested positive for Anti-CCP Antibodies. I was told there was no doubt, I had RA. Shocked and saddened, I felt lucky to have at least got a diagnosis, and knew that whilst I had no control over the fact I had this disease, I could at least take control over my response to it, and so my journey began to educate myself about steps I could take to ensure that this illness does not define me. The road will last a life time, but I am learning to live with the ghost that hides in my body.

I have read lots of book and have asked lots of questions, and whilst I am still a novice with regard to RA, I know my own body better than anyone, and I know when I am well and when I am not, and I am learning what I can do for myself that will help influence a state of wellbeing. I have found that there are sadly no hard and fast rules for diet. When I showed my consultant the pile of supplements I had started to take, she smiled and said, by all means take them, but they won’t do anything to help your RA. I didn’t agree with her, and continued to seek out other answers. So I thought I would share one thing I have learnt, and most importantly was told by an American Consultant Rheumatologist.

“The human body makes, from consumed fatty acids, chemicals called prostaglandins. Some of the prostaglandins are inflammatory and others decrease inflammation. The only foods containing fatty acids that are metabolised into anti-inflammatory prostaglandins are those that contain the omega 3 (n-3) polyunsaturated fatty acids including eicosapentaenoic acid, docosahexaenoic acid and a-linolenic acid. Some sources of these fatty acids include fish oils, algal oil, and some plant oils such as flaxseed oil. These can be used as dietary supplements. Conversely diets that include other types of fatty acids (such as those found in red meats) that are made into inflammatory prostaglandins may worsen inflammation.”

I inject my methotrexate once a week, I take the sulphasalazine, hydroxychloroquine and steroids daily, as prescribed, but I also take 2000mg of omega 3 oil, and avoid red meat. I swim 1.5 km 5 times a week. I am not yet in remission, but one day I will be, and my ghost will be my friend as it has made me learn to be grateful to be able to do my own buttons up and tie my own shoe laces, and look at the world in a different way. I may not always be able to do things in the way I want, but I will still do them, I may just have to approach it differently.

As you all already know, everyday is a challenge, but then, I've always enjoyed a challenge.

[caggy]

Hi Alice, so good to hear your encouraging story, it sounds like you have got to a good place with all your investigations and you still have to have all the meds that many of us take hoping for the best, and you will get to that place where it feels like you are in remission. Well done for being so upbeat and welcome to this site, we will all look forward to your valuable contribution.

Carol

[Hidden]

Hi Alice and thanks for sharing your journey..well the start of it. Sorry to hear you've had a positive diagnosis but it does sound like you're getting very good care. I was diagnosed in May so I'm still learning new things too about this disease and how to do as much as I can to help my body to fight it. I read about the Omega 3 fish oils and take supplements daily and I also eat oily fish twice a week. I've found losing weight, limiting processed foods and exercising regularly have really helped along with my mtx and folic acid of course. It must be a hard job for you looking after two beautiful children while fighting this so you have my greatest admiration. I agree though that you look at the world in a different way. I really love your positive attitude and hope you get that remission soon. Hoping to hear lots more from you.

Paula x

[Hidden]

Hi Alice - welcome to NRAS HU! Your story is inspiring and you will be a great asset to the site. I am always humbled when I read of people with young children or who are only very young themselves and their dealings with RA and you are no exception.

I too was diagnosed at the end of November at the age of 48. I have also found a way of keeping the disease at arm's length for the time being with a mixture of regular exercise and a very wholesome, wheat free diet as well as taking Hydroxy and Methotrexate and am almost pain free currently. Keep it up re responding courageously to the challenge of RA and do stay around please! Tilda x

[sylvi]

Alice,welcome you have found the best place for help and advice. You are doing well with your health,i take omega fish oils,glaugosome,vit c,and evening primrose. I have ra and fibromyalgia and i wouldn't wish either of these diseases on anyone.

You are doing well for a young lady with two children and long may it continue for you.

sylvi.xx

[Hidden]

Hi Alice,

Sorry this will be short, I actually came on to ask a question, maybe I still will but when I saw and read yours I mentally gave myself a kick up the bum for being such a woose and feeling sorry for myself when my RA is in remission!!

I was diagnosed after giving birth Feb 11, like you a very high RF reading at 1200, yours is the highest I've heard of! and again like you, couldn't walk or lift baby, she's the reason I'm hurrying

Stay positive, you say your not yet in remission but you'll get there, I totally believed I would and I have been for 7 months now; back at work and sometimes manage the gym.

I was put on triple therapy also (mtx, hyrox and sulpha) so when it didn't work within 6 months later I was put on an anti-tnf, within 6 weeks I was a different person.

Great site hear, don't know where I'd be without them all here! xx

[allanah]

Hi Alice

I'm so pleased you decided to blog as your story is so interesting. How you cope with RA and a young family is so inspiring and I am always glad my children were grown when mine appeared.

Glad to hear you are managing to keep up with your diet and exercise and I regret my docs (cos of my illnesses) wouldn't let me and as you see by my snake picture it really has gained me weight since my diagnosis. Keep positive and challenging yourself, well done.

Axx

[watson3]

So glad that you have joined us, but sorry that you have RA. An inspirational blog. I am always interested in how we can assist in our own healing. I will definitely add you supplement and dietary advice to my intake. I have been on steriods and have also gained weight.

I have lymphoedema in my left arm, so I am somewhat limited with the use of that arm. Tho I do swim. Not to Olympic standards but can get across the pool

You do wonderfully well with 2young children and I admire your out look on life.

I am somewhat like you, as I was diagnosed with breast cancer when my children were still at school.

Great to see another with the drive and determination to do what you can do, within your limitations.

My children used to say " its the new normal"

Keep blogging.

Carole

I'm still their yummy tho there is a bit more of me now.

[Hidden]

Hello Alice and welcome,

What a lovely and blog you have written.

It is interesting the hear what the american rheumatologist said about prostaglandins - I'll also be looking at supplementing my diet. I really admire your approach to your diagnosis and how you have taken control of it from the outset. I have no doubt that this is the most effective way of dealing with RA and reaching an early remission.

I look forward to hearing more from you in the future.

Judy xx

[Rockpool60]

Hello Alice what a wonderful insight in through your eyes of your life with RA. What a tough time you have had and with little ones too. I hope your medicines work and you get back to doing what you love to do. Inspirational x

[lyndah]

Hi Alice

Sorry to hear about your diagnosis, but great to hear your positive, upbeat history.

I recently got diagnosed in June, and you sound so similar to me, I am not on here much as like you I have a young family that takes up a lot of my time, I have a 6 month old baby, and a 6 year old, so finding time can be hard.

You sound like your talking about me! Like you I loved keep fit and worked out regularly, it all went on back burner when I was pregnant, and I tried to return when my son was 3 months old and my body just could not take it, and it was shortly after this I had my first flare, as I now know it to be. I could not lift my baby, I could not get off the floor, fastening his sleep suit was impossible and I was in constant pain, like you I know the difference between sore pain after excercise but this was much different. It just kept getting worse and worse! I went to my GP asking what was wrong with me, as my mum had MS and I was worried I had that.

After a lot of blood tests, mine came back positive for every antibody test in the book, and my rheumatoid factor was 778, not anywhere near as high as yours but apparantly mine was really high too.

I could not take it all in at first as I have always been very active and extremely fit, however all excercise for me is back on the back burner for time being till hopefully my meds kick in. Im too scared i trigger another flare and I am still in constant pain.

I started my treatment 3 weeks ago now, and like you i take supplements and fish oil and flaxeed oil, and also ginger root capsules too. Reading your post you sounded so similar to me in so many ways, it was like reading about myself!

I hope to hear from you again soon as to how your getting on, and I wish you well in your journey, I hope you and your family are well.

Thanks for sharing your experience you have given me hope so thankyou.

Take care

Lynda xx

[Aliced in reply to lyndah]

I'm so sorry that you too have had these experiences, there's a certain comfort in knowing your not alone, but I wouldn't wish this disease on my worst enemy.

I had to wean my baby early so that I could start the methotrexate, and I was incredibly sad, but I knew that if i didn't I wouldn't be able to look after my children. Nearly 8 months on, I can look back and know how much better I am, and that whilst I felt terrible putting my needs first, I had to do it, in order that I would be able to meet the children's needs. It may take time to get the drug combinations right, so stick with it. It's hard to be patient.

It can help to look at ways for your hands not to have to do so much, pull up nappies, pajamas or leggings without poppers, changing bath time to when someone else was there to do it. These small changes helped me a lot.

I am a very keen hockey player, and runner, and I have no idea if i will be able to return to the same level as before, or at all, so swimming is my thing for now. If you can find half an hour for yourself once a week to get to the pool, it was a big help to me. Easier said than done, when you have little ones, but half an hour for me, means that I can cope with whatever the rest of the day throws at me.

RA is not the end, it does require a new approach though. I have been back at work full time since March, life is busy, hard and painful, and some days it can feel all too much, it is tough to find the strength to always dig in as this disease feels relentless at time, but so far, I'm still here. I hope you can find ways to still do the things that are important to you.

[elrose]

Welcome....My gast is absolutely flabbered by the energy in your response to diagnosis, back when I was diagnosed (15+ years) having RA was a much more passive experience than it is now. Nowadays we can (and should) take an active part in our treatment which you seem to have grasped and run with. I aspire to be where you are, I too have small children, though not as small as yours (7 and 4) and I seem to exhaust all my energy just trying to stand still (in RA terms obv) I failed to respond to MTX and Ciclosporin made me sick. Hydroxy and steroids are my current diet...tho have been approved for Rituximab just waiting for appointment. Have half-heartedly glanced at the books ref diet and seeing your post encourages me that mebbe I should get back in the driving seat (at least as much as the pesky RA is willing to let me have).

Once again welcome and hope remission is just aound corner for you xx Linda

[Aliced]

Thank you all so much for making me feel so welcome. I feel slightly overwhelmed at how kind you have all been. I remember when I went to my first RA workshop at the hospital, and the physiotherapist started to bring out some of the gadgets, that would help make life easier, things to open jars, things to put your shoes on, things that scared the life out of me. I couldn't stop the tears falling down my cheeks. The physio looked at me and stopped talking. I managed to choke out the words "but I don't want any of these things", I could see some of the other RA sufferers smiling sympathetically in my direction, "newly diagnosed". Eventually a nurse stood up and said "When we work with the children who have JIA, we tell them there's nothing they can't do, nothing they can't achieve, they may just have to do things a bit differently, we have one boy who windsurfs for England, and he works hard on making sure his hands are strong." I looked at my hands which had fumbled with coins, buttons, laces, nappies and failed at numerous other daily tasks for months now and realised that with a different approach I could still take the world on, it might just take a little longer, be a lot harder, some days impossible, but the all was not lost and I just needed to be a bit smarter and clearer about my goals. Today I stood on tiptoe for the first time in ten months. Only a few people will understand what a huge achievement that is.