Help For a Friend

Hi all, I am looking for a bit of info for a friend and wondered if any of you could help? A work colleague of mine is convinced he has RA but is finding getting a diagnosis very difficult. He has fatigue, pain in his joints, mainly hand and elbows and has to go home to bed at the end of his working day he is so tired and in so much pain. Up to now his blood results have all been normal but he now has a raised ESR, but normal rheumatoid factor and CRP. None of the doctors he has seen so far will give him a diagnosis of anything and he just lives on pain killers as they will not treat. This is a very different experience to my RA journey so I am finding it difficult to advise him what to do to get answers. Has anyone out there had a similar experience?

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  • Hi Emma, I had a fairly similar experience to your friend. I was waking up with very stiff hands, aches and pains all day, fatigue etc. I was back and forth to the doctors for about 18 months they did blood tests but

    nothing showed up apart from a slightly raised

    Rheumatoid Factor which they told me was normal. had X-rays of my hands and nothing showed up. My doctor was convinced it was nothing even putting it down to a small insect bite I had at the time on my hand!! It wasn't until my hand swelled and a locum doctor at my practice sent me for an ultra sound scan that the inflammation showed itself, I was then referred to a Rheumatologist, where he diagnosed me with Sero-negative RA within twenty minutes! It took me nearly two years to get taken seriously and like your friend I was surviving on painkillers and willpower... Looking back now I think I've probably had the RA bubbling away for about 10 years. Please tell your friend to keep on persisting as we know our own bodies and when things are not right, unfortunately though it was not until I developed swelling and saw a doctor that knew a bit more about RA that they did more about it..even though it had taken nearly two years to get a referral my persistence paid off and once referred I got a quick diagnosis which proved I was telling the truth. Best wishes to you and your friend. :)

  • The search for a diagnosis is a constant theme on any inflammatory arthritis forum. When are doctors going to wise up? Many rheumatologists are like dogged detectives, they don't stop looking till they find out what is or isn't going on, but some ...... well. Maybe if inflammatory arthritis was a life-threatening disease things would be different, though thank heavens it isn't, even if it can shorten our life span somewhat.

    Sorry! I've just heard of and met people in this position rather too much lately & I'm feeling frustrated for them. The truth is, as kiki11 says, that persistence is the only way. There are those who start off thinking that if a doctor blows them out then they must be imagining their symptoms, or 'just getting older' or 'just going the menopause / manopause(?)' or whatever. But RA and other types of inflammatory arthritis can be difficult to diagnose and some doctors do seem to over-rely on certain key symptoms and signs and ignore the patient's own account of their problems. Tell your friend to ask for a second opinion from a different rheumatologist and at a different hospital if needs be. It's daunting but many, many times it's the only way people actually get a diagnosis. Also he may not have RA, there are other forms of inflammatory arthritis that are even more difficult to diagnose, such as psoriatic arthritis. He could have another condition altogether but it still needs to be diagnosed. He might think being that persistent is a bit extreme, but it isn't, loads of us have had to do it.

  • Hi I sympathise. He should maybe start writing down a pain diary each day, rating the pain out of 10 and where it is. Also he should take photos of any swelling or anything that worries him. Take it all to the GP, insist on being re seen and show them to the Rheumy. I have sero negative RA, it took two consultants only 30 mins of looking at me to give me a diagnosis. Keep persisting I think xx

  • Hi Emma yeah I agree with all other posts...I would tell your friend to keep going back to doctors no matter how much he keeps on at them....I started this journey 5 years ago had numerous tests...was then diagnose two years ago with sero positive RA...and even now I'm been referred on to another specialist who deals in other immune defiencies for more answers...so my advice to your friend would be pushing more tests more appointments no matter how long it takes....good luck...Nicola xxx

  • Hi emma36 and all of you, This does seem to happen with the R/A factor, I myself suffered for 10months, before it actually showed in the blood, by then as it was very aggressive (ser0-positive) I was already crippled in feet, shoulders, wrists, knees and hands.

    I was in and out of the dr. surgery so many times, he told me it was "all in my mind". I felt very ill. and had lost such a lot of weight

    So I personally emma would tell your friend to just keep harping on at his dr. all the best bluetit33

  • emma36 I was 29 when the MD diagnostic me RA, how a thing like that can happen to a sport girl, well happen nobody give a answer even the doctor said we don´t know what cause and it dose n´t have a cure.

    Any medication in the market can work, but if we don´t make changes is gonna stop working with the time past, so suggest he may like to look at youtube and look for the clint padison diet that diet change my life, I was in crutches when i stared is important to continue in see the RA in get medication too,right now to stop the pain, but if he continue in that diet soon can be out too.

  • Do you also suffer osteoporosis as well as RA? If so what do you supplement dairy with?

  • Hi, nomoreheels is very important to make changes first cut your sugar, oil, salt, all your dairy and the meat,for sweet use agave, salt use Celtic sea salt, olive oil extra virgen just in your salads , but you can go to youtube in looking for clint padison diet, it works I can see in my blood test.

  • All this is fine but I'm not compromising my bone health (osteoporosis) by not having dairy. Each of the 4 Rheumatoid Specialists I have been under have each advocated dairy in all its' forms. As it is I take a bisphosphonate & calcium/vitamin D tablet to shore up my density. Not sure it's for me.

  • Ok, I've taken a look at the diet online. Nope I'll be staying with the tried & tested medication that works for me, thanks anyway & hope you continue to be well on the diet.

  • Thanks for all of your replies x

  • Nras do a research based section on diet and proven dietary effects on nras.org.uk that you might find useful x

  • Hi Emma,

    Following on from all the replies here, please do urge your friend to go back to his GP and ask for a referral to rheumatology. We do know that the RF blood test can be negative and a person can still have RA. This is just one test among several that will be done and should never be looked at in isolation. Given that he has a raised ESR, this indicates that he does have raised levels of inflammation. He does need to be referred on to rheumatology to be properly investigated and given a correct diagnosis. This can sometimes be a lengthy process so the sooner he is referred the better.

    If he would like to give us a call on the helpline we would be more than happy to speak with him.

    We are here Mon - Fri 9.30am-4.30pm

    Tel : 0800 298 7650

    Best wishes

    Sally

  • Hi all,

    Following on from the recent posts here I just wanted to add that sadly at this time there is no cure for RA .It would be so wonderful if there was. Certainly though with the correct medication and treatment a person can have periods of remission from their RA , however it is never a cure.

    Diet may pay a part in helping to alleviate symptoms of RA , however we have not come across conclusive evidence that diet alone can "cure" RA.

    As Allanah mentioned earlier we have a section on our website on diet and I have linked it here for you:

    nras.org.uk/diet-rheumatoid...

    Best wishes

    Sally

  • I've had RA for 28 years, and I'm still and always have been sero-negative. Lucky for me, my rheumy looked at my pain and joint damage and took no notice of the fact that I don't have the RA factor in my blood. Also have Sjogren's Syndrome.

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