RA Path to diagnosis

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Petelang
Petelang Member Posts: 5
edited 12. Feb 2020, 14:20 in Living with arthritis
Hi All.
Only recently discovered this site and have been eagerly exploring your stories to discover what lies ahead potentially for me. I thought it may be useful to share how I came here and it was an amusing saga. Up until a year ago I was still working, self employed, my wife and I ran a catering business and busy shop with delivery rounds. I also own and maintain vintage cars which I use for weddings so always busy. A normal day involved much lifting, stairs, twisting and dexterous use of hands. I was fine (aged 58 ish) and then a few strange things happened. Doing a delivery round one day, lifting the van doors up caused me terrible shoulder pains. A few days rest and it cleared up, but then doing some car work with spanners caused a repeat, again after a day or two all returned to normal. Then, driving one of the cars to a wedding I experienced numbing of the middle fingers on right hand and an increasingly bad ache in the arm. It was a real bone ache, no position was comfortable and the whole hand felt like it wasn't mine. I describe it as the hand felt like a "paddle". It was so severe I had to stop and rest an hour and then drive one-handed. The pain continued for a couple of days then faded away with just Ibuprofen and paracetamol.
Some weeks later, something similar happened to my left arm! The same ache, numb fingers, immobility. Again it faded after self medication. I then fell off a wet step changing a bulb at the shop and landed on right shoulder whacking my right arm on the concrete. Just bruising. A week or two later a small floating lump was evident on my elbow, I thought I'd chipped a bit of bone off and the ache was back so consulted the GP, retelling the foregoing tale.
Right away after a brief examination he said "RA". I was in complete disbelief and sure he was wrong. He arranged consultant access and during the interval I had further repeat flare ups, one which took me to A&E for strong pain relief and a second where I tried a physio. After the physio I felt like a teenager again, but only for a few hours!
So the consultant confirmed the diagnosis and here I am now on the learning curve a year later, medicating with Hydroxychloroquine, Omeprazole, Ibuprofen and if required Naproxen during flares.
Notably, I was astonished that RA can rear it's effects so quickly. Treatment seems to be containing it and flares are rare unless I "overdo" it and I work a day, rest a day. Fortunately we were able to retire and sell the shop business but I still maintain and drive the cars.
I have questions, particularly I'm suffering from swelling and bleeding gums which the dentist figures is medication side effect, consultant being non committal about it. I also suffer swelling in the knees after kneeling or walking especially uphill. It's a whole new world! My RA doc dismissed the knees as general wear & tear last visit but I'm concerned it's deteriorating.
Now my wife is retired, she wants adventure and holidays all over the globe. I'm reluctant because of the unknown consequences and effects of hot/cold climates, high altitudes, trekking and exploring at a hectic pace...etc.
With less day to day activity, a normally active reasonably fit man is also putting on weight, the struggle is real in curbing diet but not taking as much exercise.
I look forward to understanding more and finding the path through this maze.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Petelang. Welcome to the forum and thanks for such a thorough and well-described account of your arthritis journey so far. Your description of the numbness and pain in your hands is so similar to some of my own experiences. Well done to your GP for being clued-up straight away as to the likely cause. It's sounds as though you are doing well in finding ways to manage your situation - "work a day, rest a day" etc. It's so important to be able to work out our limits and what we can do to best look after ourselves.
    I can understand the difficulty of balancing your wife's hopes for adventure and travel with your limitations and worries - perhaps there is a successful compromise to be made where you try a first trip that doesn't involve too much in the way of extremes or exertion and see how it goes?

    I'm including a link to the section on the Versus Arthritis website on Rheumatoid Arthritis, as it has some info about managing flare-ups and general living with RA that might be helpful:
    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    There is also this section with advice on exercise:
    https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/about-exercise/

    With regard to your knee issues, if you feel they are deteriorating I'm sure it's worth speaking to your RA doc again. It also might be worth speaking to your GP to see if there is a local pain clinic you could attend.

    Undoubtedly you will find people on here who share similar experiences and I'm sure you will find the forum a friendly and helpful place - do keep us up to date with how you're getting on and feel free to ask questions.

    Best wishes,

    Ann
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    People think they know what arthritis is, after all everyone knows it comes in two kinds and only affects older people. Wrong and wrong. :lol:

    Who knows what lies ahead for you with your RA? At the moment you are only taking a mild DMARD, a stomach protector and anti-inflammatories, in my arthritic terms that's nursery slopes but for you, crikey: :shock: what a shock this must be and I feel for you.

    I have psoriatic arthritis (PsA) which went untreated for five years and incorrectly diagnosed for nine. I began when in 1997 I was 37 and my then GP was a clueless twerp about auto-immune arthritis, I began sulphasalazine in 2002 and since then have worked my way through the rheumatology drugs alphabet. Ten years later a friend also began PsA, his GP was better informed and he began sulphasalazine (the next step up from hydroxy) and to this day remains on just that. His PsA has not spread, he has not also aquired osteoarthritis, he is still working full-time, neither of us understands each other's experience of the same disease. :lol: I am convinced that the quicker the diagnosis and the sooner one begins the meds the better the outcome will be, I have seen the progress in diagnosis and treatment and things are much better now than they were.

    People who are doing well with the medication tend not to seek out a forum as they naturally assume everyone's experience matches theirs. I am doing well on it but am also realistic as to what that means. You sound as though you are already trying to master the Arthritis ABC (adapt, believe, compromise) and that is a good start! It changes how we live our lives but does not have to change what we get out of life. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi Pete and welcome from me too. My RA beginnings were a bit different. My family thought I was making a fuss about 'chilblains' on my fingers but I think the doc remembered I'd had 'rheumatic fever a few years before and put two and two together. Bloods confirmed it. That was going on 60 years ago (Criikey! Am I that old :shock: )

    I take methotrexate and hydroxy(chloroquine). I do hope you don't take ibuprofen and naproxen together as they're both anti-inflammatories and you'd be overdosing.

    The gum problem I can't relate to. Some people, as they get older, do have bleeding problems with gums. Do you use an electric toothbrush? That might help but really your dentist should advise.

    It is, unfortunately, just possible that the knee swelling is, indeed, 'wear and tear' or, to give it its proper name, osteoarthritis. That would show up differently ón x-rays to RA damage (quite a few of us have 'done the double') and is treated not by a rheumatologist but by a GP, basically with the meds you're already taking plus physio exercises.

    I believe high altitudes are actually good for RA though humidity isn't so holidays can be a very unknown quantity. 'Trekking and exploring' definitely sound like a recipe for disaster. We have to pace ourselves not put ourselves under pressure. We have to remember that he who goes up must also come down however knackered the knees might be. And, if another trip is planned for the following day....... :?

    It is a fact that arthritis affects everyone in a family but in different ways. My sons, when young, couldn't have all that their friends had as we'd only one wage coming in. My husband sometimes, after a day's work, had to cook, clean and launder for them when I had spells in hospital. Though they soon learnt independence. On holidays I had to do so much walking, find a bench and wait for them to come back.

    When Mr SW retired, and wanted walking holidays abroad, he started by going on those where you're in a group and walk for the day while your luggage is transported to the next place. This evolved into camping with friends then staying in gites, hiking and sightseeing. Meanwhile my sister and I got together to do less strenuous things for the fortnight. Your wife will, sadly, have to learn the realities of arthritis. Choices have to be made, often not between wanted and not wanted but between preferable and definitely not. I suggest you try something relatively easy at first and somewhere where you can stop if it all gets too much.

    Sorry to sound like a killjoy but, believe me, I've had a good life with arthritis. I / we still visit our son in Los Angeles every year for a month. Mr SW does some trail walking and golf, with son and grandson when work / school / baseball permits and I just sit under the brolly by the pool with a cool beer and trail mix. It's tough but someone has to do it :lol:

    _________________
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Arthritis affects us and those around us, be they spouses, children, other family members, employers, friends etc. It certainly helps if everyone does the ABC in different ways to us. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BettyMac
    BettyMac Member Posts: 217
    edited 30. Nov -1, 00:00
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    Hi Pete

    You mention swollen, bleeding gums.
    It’s true that many meds are linked with this but there’s good news because there is something you can to to mitigate this.

    This is going to be a wee bit long-winded but I want to give you a decent explanation.

    What’s changed, because of the meds, is how your body reacts to the toxins produced by plaque bacteria.

    (The hard stuff is called calculus, or tartar - and it’s a mineralised version of the soft stuff. The trick is to get rid of it while it’s soft.)

    Plaque is a bio-film which grows on tooth surfaces. It’s composed of several types of bacteria and the longer it’s been there, the more “interesting” it gets.
    The bacteria in early plaque is more associated with tooth decay but after about 2 days, the balance changes to a higher proportion of the ones which cause gum disease. This is because with time the growing medium suits them so they proliferate.
    These later bacteria produce toxins which cause a microscopically fine ulceration of the gum tissues - hence fragility and bleeding.
    Your body’s defence system then responds by sending inflammatory cells to the area, hence the swelling.

    The secret to improving the swelling and bleeding is to have really good oral hygiene.
    Careful brushing, morning and night - spending about two minutes on the job.
    And - some form of daily interdental cleaning, to get at the bits the toothbrush can’t reach. A toothbrush can only reach about 70% of the tooth surfaces.
    There are a variety of aids which can help - floss or tape, interdental brushes, interdental sticks etc.
    Personally, I prefer dental tape because you can wrap it around the curved side of the tooth and gently slip it under the swollen gum.
    The worst sort of plaque bugs like to live in the dark nooks and crannies so anything you can do to disturb them is worthwhile.

    Incidentally - not all floss/tape is the same. Try a few until you get one you like.

    Also - despite what the adverts would have us believe, mouthwash on its own is not the answer. It’s best used after you’ve done the physical tooth surface cleaning and disturbed the biofilm.

    We’ve all got into the habit of toothbrushing, but making interdental cleaning a habit can be difficult.
    The trick is to link it to a habit you already have. This might be toothbrushing - but it might also be sitting in front of the telly watching the 6 o’clock news or Corrie. You don’t have to do it in the bathroom!
    Also - start with the easy to reach areas, like the bottom front teeth - and once you’ve built a bit of confidence, explore the areas further back in the mouth.

    There may be a wee bit of discomfort and bleeding until you manage to get the tissues healthier. The trick is to be gentle - but thorough.

    I realise that if your hands and fingers are not cooperative, dental hygiene is a lot more difficult.
    Electric toothbrushes can be excellent and an OT would be able to suggest aids and adaptations for you.


    If your dental practice has a hygienist, I’d go and see her/him because they’ll be able to help you work out a good routine.

    Hope this helps - and apologies for the length of the response
  • Petelang
    Petelang Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you all who have replied. I am humbled as I'm sure my suffering is minimal in comparison. Thanks especially for the dental tips. It's an issue that the GP didn't want to comment on and the Dentist did suggest an oral hygiene issue. Despite extensive electric toothbrush work daily, the dentist suggested a water pick and I have been amazed how much the brush missed. Some weeks on of jet washing and scrubbing and it is improving. The dentist however was less than impressed when I told her "life is too short to floss!"
    It's a curious condition and what triggers the flares remains a mystery to me yet but they are fewer and further between now.
    So thanks again and I'll check in after a trek round the continent of S. America.