How long have you had RA? What's your RA story?

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Patients Rheumatoid arthritis

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Topic of the discussion


Posted on
Good advisor

Hi everyone!

Rheumatoid arthritis is an autoimmune disease, and its symptoms can appear at a very early age, but it is usually diagnosed in adults of 30-50 years old.

In your case, how long have you had RA? At what age were you diagnosed? I invite you to compare your experiences.

To go further in this discussion, I suggest you talk about what has changed in terms of patient care, treatment choice and other, since you were diagnosed with RA.

Have you had a lot of information about the disease? Have you been following the news about the progress of medical research in the field of RA and other auto-immune diseases?

How has your treatment plan changed over years? And what about public awareness of the disease?

I think sharing your opinions on this topic can help us learn something more about the condition and take an look at the evolution of patient care from a different angle.

Thank you all!

Margarita

Beginning of the discussion - 11/12/2017

How long have you had RA? What's your RA story?
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Posted on

Actually I think I had it from birth ....my mother says I never crawled as a baby ...she states that I shuffled along on my bottom ...as I would cry on my knees...so sliding around was easier or less painful....problems with feet and hips but looked normal.... special fur lined ankle boots because always suffering with cold feet ( bad circulation as I see it) chilblains etc..then diagnosed with Raynaud's disease at about eleven years old ...my hands and toes would go numb and blue.....got a weekend job to earn money was asked to scrub floors ....every time I knelt I would have sharp needle pains in my knees...like being stabbed with needles ,....I struggled with this.

Then at nineteen found to be extremely anemic .....spells of kidney problems all throughout my life but never been addressed.....birth of children ....always anaemia problems...also bone ache.

when I say bone ache I would be so cold and couldn't get warm ....to do so meant extremely hot liquids hot water bottles and wrapped snugly in bed before levelling out.....arthritis struck at age 40 even earlier really.

went to live in a warm climate abroad and all symptoms disappeared...only anemia.  Interestingly was diagnosed with a thyroid problem and given tablets of 10 mgs .....Then I returned to England and immediately was sent to a consultant that diagnosed RA ....they refused to continue thyroid medication .....given different medication that caused my weight to soar by three stone.

Exasperated I stopped taking the medication prescribed as feeling no better and weight creeping on even though I kept active and ate healthy.

consultant just told me to go away and stop wasting their time ....so continued self diagnosing .....took b12 vitamins iron zinc during winter months...vit e and then after walking with two sticks visited the doc ...still insisting the thyroid was 50 50 ....but suggested acupuncture....so did.

private blood test done at the same time as one done by the national health....private one came back diagnosed autoimmune disease of hashimotos of the thyroid....the nation health reports nothing wrong but high blood pressure....high cholesterol  need to take statins which I won't take .

so I have lost faith in medical and or medication 

How long have you had RA? What's your RA story?
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Posted on

I was diagnosed with Rheumatoid arthritis when I was about 54. My ESR levels had being creeping up and the GP kept asking me if I had any pain anywhere. At the time I didn't but then about eight months later woke up one morning with pain and stiffness throughout my body which wouldn't go away. Eventually I made the connection with the ESR levels and although the GP thought low vitamin D levels at first after further tests got my diagnosis.When I was a child I suffered with pain in my knees and they sometimes felt hot and it was painful to kneel. My Mum used to say it was growing pains. As I got older late teens I notice it would come on when doing alot of walking then I discovered that soluble aspirin worked on it within half an hour and pain was gone. I moved south and attacks became less frequent and disipeared guess remission then came back different format. Think I had it as a child certainly the cold made it worse

How long have you had RA? What's your RA story?

Posted on

Hi I'm 57 and have had RA for 2 years but sure I've had it a for number of years.

It's turned my world upside down. I've been told I have another problems which adds to my condition.

I have struggled with work as a fegistered nurse as it's mainly affected my upper limbs and hand writing is difficult at times. I now work 22.5 hours over 3 days. 

My colleagues are of a similar age and I hear is their menopause and how tired they are. It's difficult to say that I have this too and together with my RA and broncheasis I feel very tired possibly more than my colleagues but if I mention this I'm told I'm selfish and only think of myself and no one else which is not the case. Do I keep quiet about how I feel which I'm told by my manager that I need to let them know if I'm feeling low or more tired etc. 

Sorry for my very depressing post but have in a lot of pain for the last few days in my hands and wrists.

How long have you had RA? What's your RA story?

Posted on

Hi...I’ve had RA I believe for a year now....brought on after a bout of Reactive Arthritis in November 2016.....mainly both shoulders and left elbow effected, but occasionally the same toes on each foot flare up, and when I get chronic fatigue my knees become affected also....it’s been a slow process getting to see a consultant with one thing or another, appointments cancelled or appointments not ever reaching me in the first place resulting in me being discharged by the hospital before I’d even had chance to see someone ....I hit a dark period where I thought I was going to be totally missed by the system, so started my own healing, through diet change and supplements. I haven’t gone down the medication route as yet, even though it’s been offered, as I’m not one for taking drugs, and I don’t want to suffer a lifetime of side effects. I’m coming out of my dark period now and have finally got an appointment to see my Rheumatologist this month.

When all this started it was the worst pain I had ever experienced, I was unable to drive, or get dressed or do any activities which involved the shoulders, I lost grip in my hands and started with Raynaud syndrome, I would wake in the night in tears with the shoulder pain......my upper arms would throb simultaneously and burn like they had been punched repeatedly and were sensitive to touch...and more recently I’ve had a few occasions where I have just randomly lost balance, like my legs just decide they are going to go in different directions without warning!.....and sudden movements cause extreme pain, so I move my arms slowly and deliberately now to avoid the tearing pain.....I’m about to turn 45 years old, and don’t want this to go any further, the thought of this being lifelong terrifies me...but I won’t be beaten. 

How long have you had RA? What's your RA story?

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I was formally diagnosed with Rheumatoid Arthritis at 34. I knew I had it back in my teens but typically at that age I didn't want to have what I perceived as an old person's problem. My dad also has the disease so I knew full well what the symptoms were. I'm now 51 and I still think I'm to young for it. ? A lot needs to be done still to alter that misconception. 

How long have you had RA? What's your RA story?

Posted on

I was diagnosed when I was 16.... I’m 49 now. The pain in my hands and wrists is unbearable at the moment. I can’t sleep. I used to take suphasalazine.... that was a while ago. I’m having an MRI scan tomorrow. Hopefully I can get something done after this

How long have you had RA? What's your RA story?

Posted on

I was diagnosed when I was 52 that was 16yrs ago and it hit me like a ton of bricks one morning on holiday, my fingers and hands and feet were like pins and needle pains and walking was hurting. No previous signs before hand I was a super fit person who weight trained three times week, went swimming, cycling, no one else in the family had ever had it. It got where I could barely walk at all, that was when I was diagnosed with to see oacute  RA at hospital and was put on an intense course of methotrexate. I have it in my      arms and shoulders and knees too. I have had 4 ankle operations along with 6month stint with a frame on, I have numerous plates and screws and pins holding them all together with one ankle now fused. BUT on a happy note I can walk ok with as much pain as I used to have so surgery does work sometimes. Right now my shoulders are giving me a lot pain like permanent toothache. And awaiting a scan on my right one to see how long I can cope without having a replacement,.    

How long have you had RA? What's your RA story?

Posted on

I was diagnosed just over 4 years ago... spent about a year back and forward to the gp with extreme pain and fatigue. Actually didn't want to go on i think I told them at a point if every day was gonna be like this...

How long have you had RA? What's your RA story?

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I was diagnosed a year and a half ago. But I have suffered for a few years without knowing what it was and being told it was all sorts of things like tendonitis etc. I am an air conditioning and refrigeration engineer and my hands are my living. It's left me scared of having to retire younger than I should as I can't afford it I'm 54, diagnosed at 52. No one tells you anything about benefits etc and having worked since I left school I'm completely clueless. 

I'm also suffering from extreme hip pain but my specialist says it's not RA cos it doesn't affect the hips, is that right or wrong? 

My wife says my head is in the sand and I'm in denial because I don't keep up to date with any advancements. The truth is, I am only interested if it's something that can help me now, not in 10 years time when it's been tested and approved. 

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