Reaching out to get some understanding

peppar
peppar Member Posts: 7
edited 22. Nov 2018, 09:00 in Say Hello Archive
Hi, I've just joined. I joined because I have no one to talk to, my GP has no advice for me. They diagnosed through blood test mild-osteoarthris, but I don't have pain or redness or visible swelling. However, what i do have is stiff fingers, weakness in my fingers, discomfort and stiffness in my knees going downstairs particularly. My hands feel like they're swelling into balloons at night or have pins and needles, I get huge fatigue and I feel so down, because no one understands because they can't SEE it. I'm only 44.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello Peppar

    Welcome to our forum. Im sorry you've had such a tough time. You will find lots of advice and support from our members.

    You can also call our helpline on 0808 800 4050.

    Heres a link to Arthritis Research UK which explains more about OA, you can also request they send a copy out to you ://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis.aspx

    I hope this helps a little

    Sharon T
    Moderator
  • Babsb
    Babsb Member Posts: 26
    edited 30. Nov -1, 00:00
    So sorry you are feeling down. Yes it can be quite scary when you get a diagnosis of oa. We don't always have signs for other other people to see but the signs for you are there. Stiff fingers, knees, pain is the worst thing. I hope you get the help you need. Please come back and let us know how you are going on.
    babsb
  • stickywicket
    stickywicket Member Posts: 27,106
    edited 30. Nov -1, 00:00
    Hello peppar and welcome to our creaky gang. You definitely do have people to talk to now so I suggest you read the info that Sharon gave you then ask away and we'll try to answer any questions you have.

    Unfortunately GPs can seem a bit uninterested in OA as there's not a lot they can do for it other than prescribe pain relief. We can do things for ourselves though - exercising affected joints, a healthy diet and lifestyle etc. It really does help.

    You are right, though. People don't understand especially when you are young. I was diagnosed with RA at 15 and it was sometimes tough explaining to people. But now you are with people who do understand and I hope you'll find us helpful and informative.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I've never heard of OA being diagnosed by blood tests - I thought that was the preserve of the auto-immune kinds of arthritis; my OA was diagnosed after Xrays which clearly showed joint damage. Mine affects my ankles, knees, toes and one shoulder, my other arthritis affects those joints plus some different ones. Life is not a bowl of cherries but why should it be?

    As yours is in the early stages it will seem very apparent to you, I am in my 21st year (I began aged 37) and now it's just a fact of life. OA is very common and there is not much the GPs can do apart from prescribe pain relief, maybe an anti-inflammatory medication (with stomach protector) and physio, all of which will slow the spread of the disease. I have had auto-immune troubles since birth so for me it's more of the same but I still recall the shock of my OA diagnosis: I naively thought one could only have one kind. :lol:

    I hope you will find teh forum to be of interest - we all get it because we've all got it. I wish you well. DD
  • peppar
    peppar Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you everyone who's posted a reply, it really is nice to hear that others are out there for me. I was wrong in what I said about blood tests, I had those first, and had signs, for a couple of years, of inflammation. Then my achilles tendon was giving me major discomfort and I saw a specialist, but she was very dismissive and said I simply needed to lose weight (I'm about 2 stone overweight) and do specific stretches. In the end I massaged them myself through self-help videos online.

    So, yes, in fact, I did have x-rays of my hands last year and the results of that, was the basis for the OA diagnosis. Now the GP says I should get the RA blood tests done to ensure it's not that type, and then she would recommend physio. I asked to get referred to a dietician (to help with weight-loss but also an anti-inflammatory diet) and she said that you'd only get one of those if you had life-threatening obesity problems. I'm stunned how fast this has developed, it was one or two symptoms in the last two years, and I thought that pre-xmas is was just a long flare up, but it seems like it's worsening at a rapid pace.

    New vitamin supplements
    One thing new that I have been taking, since 30 Dec, after reading a couple of articles online, is a daily combination of 1 x calcium and vit D, 1 x cod liver oil and evening primrose and 3 x chondroitin, glucosamine and MSM (£19 for 60 tablets) and I must say, for me, I think my stiffness has lessened certainly and the speed to get my hands working in the morning is faster by maybe 60%, in just 2 weeks! And my knees feel stronger (going upstairs only).

    I try to stick to 10,000 steps every single day, but I could use some advice on low impact exercise and a high veggie diet to help me get the weight off. I don't have time for gyms what with work, being a mum etc. I like weights, swimming and walking.
  • stickywicket
    stickywicket Member Posts: 27,106
    edited 30. Nov -1, 00:00
    Physio does help a lot and you will probably find Arthritis Care's booklets on Exercise and Healthy Eating very useful https://www.arthritiscare.org.uk/living-with-arthritis

    I don't know whether or not your supplements will be helping. ARUK, a very reliable site, have a comprehensive survey of complementary therapies https://tinyurl.com/y8weg5bh . Do check with your pharmacist that they won't clash either with each other or with any prescribed meds.

    We have several members on here who have lost a lot of weight. Slimming World seems to be a favourite but other options are available :wink: don't think a high veggie diet is essential though it's certainly good. Simply cutting out the rubbish - cakes, biscuits, crisps, chocolate, pastry etc - does it for me.

    I hope the blood test will help one way or another. Do keep us informed.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello peppar the others have said it all I just want to welcome you to the forum..and I am sure you will find it very useful..
  • NJacana
    NJacana Member Posts: 5
    edited 30. Nov -1, 00:00
    peppar wrote:
    mild-osteoarthris, but I don't have pain or redness or visible swelling. However, what i do have is stiff fingers, weakness in my fingers, discomfort and stiffness in my knees going downstairs particularly.

    Hey, Pep. I found this helpful: https://www.arthritisresearchuk.org/arthritis-information/complementary-and-alternative-medicines/cam-report/complementary-medicines-for-osteoarthritis.aspx

    I tried half the crap on the list and found the top one, Capsaican helpful. I use it before bed as needed and before yoga in the morning. And now that my left toe knuckle is giving pain, gonna try it on there tomorrow. Best wishes.

    ...Kate
  • JoeB2
    JoeB2 Bots Posts: 31
    edited 30. Nov -1, 00:00
    A blood test, in isolation, cannot diagnose osteo-arthritis and, in any case, osteoarthritis is not exclusive (i.e. it can exist with other types of arthiritis and this is not uncommon).

    However, some types of blood test, such as an ESR or C- Reactive Protein, can indicate the presence of inflammation which, when combined with symptoms and clinical signs, can certainly be suggestive of arthritis of some type.

    At many medical schools the adage - "Treat the patient attached to the result not the result attached to the patient " is taught.

    Additionally, "Correlation does not equal causation" is another favoured maxim.

    Both are valid and sound advice.

    The problem with many common tests for inflammation is they are, for the most part, relatively non-specific.

    I would suggest returning to your doctor and asking him:-

    (a) How can he be certain that it is arthritis causing your elevated 'inflammatory markers' ?

    (b) How he plans to confirm his clinical suspicions (which may be perfectly reasonable)

    (c) Your options and his recommended plan for further diagnosis and management as appropriate.

    I hope this helps.

    Good luck.

    Arthur
  • peppar
    peppar Member Posts: 7
    edited 30. Nov -1, 00:00
    Arthur45 wrote:
    A blood test, in isolation, cannot diagnose osteo-arthritis and, in any case, osteoarthritis is not exclusive (i.e. it can exist with other types of arthiritis and this is not uncommon).

    However, some types of blood test, such as an ESR or C- Reactive Protein, can indicate the presence of inflammation which, when combined with symptoms and clinical signs, can certainly be suggestive of arthritis of some type.

    At many medical schools the adage - "Treat the patient attached to the result not the result attached to the patient " is taught.

    Additionally, "Correlation does not equal causation" is another favoured maxim.

    Both are valid and sound advice.

    The problem with many common tests for inflammation is they are, for the most part, relatively non-specific.

    I would suggest returning to your doctor and asking him:-

    (a) How can he be certain that it is arthritis causing your elevated 'inflammatory markers' ?

    (b) How he plans to confirm his clinical suspicions (which may be perfectly reasonable)

    (c) Your options and his recommended plan for further diagnosis and management as appropriate.

    I hope this helps.

    Good luck.

    Arthur
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi peppar, if you want to say something in a reply don't click on 'reply with quote' because all we see is what has already been said'. it is misleading - there's another button, to the bottom left under the comment box marked 'reply to topic' - click on that and a blank screen will appear for you to type your comments then press submit. DD
  • peppar
    peppar Member Posts: 7
    edited 30. Nov -1, 00:00
    My recent blood test has confirmed it isn't rheumatoid arthritis. So, from several blood tests in the last three years, (showing inflammation every time etc), consistently stiff fingers, and the xray results from last year - all have culminated in a comment from my GP saying, you're very young for arthritis, but it looks like it might be 'mild-osteoarthritis'.

    I'm getting pretty regular flare ups of general joint stiffness (every 2-3 weeks), exhaustion, depression, (I take the tube every day, walk 10,000 steps, but going downstairs really causes discomfort in my knees) and my fingers are really stiff, especially in the morning and worse with the recent cold weather (although they look totally normal).

    Just this week, I have experienced grip weakness in picking up and pouring a half-full kettle in my left hand (I'm left-handed) and I can't undo necklace clasps very well.

    I worry about the onset being so rapid, it seems to be compounding...could it be anything else? Should I ask my GP to refer me now to an arthritis specialist (rather than a physio)? I worry that I won't be able to work in the future, I told my boss last week that I'm exhausted and took a day off, and that I had this recent diagnosis, they're being pretty ok about it at this early stage.

    But, should I be checking anything else with my GP? Should I be exercising and strengthening my muscles/joints or resting them?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The bloods have confirmed little: there are around three hundred kinds of auto-immune inflammatory arthritis of which RA is one: there are sero-positve kinds (where rheumatoid factor is present in the blood) and sero-negative kinds (where it isn't). RA can be both sero positive or negative, I have psoriatic arthritis which is a sero-negative kind. Inflammation does occur in OA but it tends to be temporary and OAers do not have regular blood tests GPs know a little about a lot, I think it's time you were referred to a rheumatologist who knows a lot about a little. DD
  • CeeJay
    CeeJay Member Posts: 5
    edited 30. Nov -1, 00:00
    Hello Peppar, just wanted to say hi as I'm new to the forum too.

    Sorry that you seem to be having a tough time. I went to Physio and they recommended an app designed for sufferers with knee and hip pain.

    Before you try I would recommend you discuss it with your doctor or Physio (when you get an appointment) to make sure it will suit you.

    It is called 'Escape Pain' it is delivered by NHS and approved by NICE.

    I'm following slimming world. However me being a cheapskate :lol: not joined, just find recipes on the internet and You tube. Have cut out cake, crisps and have smaller portions. I have lost weight.

    Good luck and always happy to chat.
  • peppar
    peppar Member Posts: 7
    edited 30. Nov -1, 00:00
    So after months of ‘seeing if I can live with it’ and the GP being worse than useless, I realise I’m miserable. I don’t have flare ups, it’s just all the time with one symptom or another. I’ve made another appointment with my GP in 2 weeks time, what do I need to do to get diagnosed properly and get referred to someone who actually knows what they’re talking about? Are there specific questions I should be asking?

    I seem to have symptoms for both RA and OA - but lately the stiffness in my ankles and hands, swollen feeling in my hands, pain in the top of my fingers and pins and needles is relentless at night and in the morning. I’m not getting sleep because of the numbness.

    Sorry to be so down about it, but because no one can ‘see’ it, no one around me has any real empathy I’m anti-medication, and a bit overweight, but the idea of exercising fills me with dread, just running for a bus hurts my knees. My GP said if I wanted to see a dietician on the NHS I’d have to be morbidly obese, which is ridiculous!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm not sure why we expect people to see it, I don't see the invisible illness of others and, as a condition, arthritis in its early stages, is invisible.

    Exercise is a good thing but it has to be the right kind and suitable for you. I use a cross-trainer at a gym, sometimes the treadmill but only for short bursts; a little and often is far more beneficial than a huge amount once in a while. I have been working with a personal trainer, it's challenging, painful and sometimes frightening but as that is my life anyway what's the difference? Exercise is not running for a bus, it isn't training for marathons, in my case it is walking for around five minutes unaided on one day, ten minutes the next, fifteen the next and so on. On the rougher days (of which there are many) and my target could have been 30 minutes I reset to five and start again. I have never run for anything except when playing tennis. I can no longer cycle, swim, dance or play tennis but so what? I had my days in the sun, now my life is different and I have to change accordingly. Unlike you I have been adjusting for twenty-two years so I've got the hang of it.

    As for diet, the answer is straightforward but doesn't yield immediate results which is not the done thing nowadays, we want what we want and we expect to get it now (or preferably before we know we want it). I am eating better, eating less and moving around more. I chew each mouthful at least thirty times and try not to eat in front of the telly because I want to feel the 'full' signal from my stomach. Sometimes I will leave a very small amount of food but if eating it will not bring pleasure then that is the right thing to do.

    There is much we can do to help ourselves because there is much the medical profession cannot do to help us. They cannot change our attitudes, they cannot change our willingness (or not) to get going with with a new way of life, we have to do that for ourselves and it is not easy. They can, however, provide the medications which may make things at least a little more comfortable for us to do. I set myself low targets because that way I reach them and feel satisfaction;. if I aim too high I miss altogether, the emotional and psychological fall-out from that is not worth it. DD
  • stickywicket
    stickywicket Member Posts: 27,106
    edited 30. Nov -1, 00:00
    I think one problem is that you seem to feel that you have an autoimmune form of arthritis whereas your GP and the x-rays conclude OA. You could, if you wanted, see a rheumatologist privately. I guess that would probably be conclusive but not definitely. Arthritis, of any kind, is a wily beast.

    If it's any help, my RA started in my fingers. They were red, knobbly and swollen. I was also incredibly tired. I was doing O-levels at the time and was only allowed into school on exam days and only one exam per day. I had to do rough work left-handed as my right hand couldn't do both that and a 'fair copy'.

    I've never had pins and needles or numbness. From my time on these forums, I associate them with nerve damage caused by OA. That's one of the reasons why exercise is so vital whatever form of arthritis we have. The supporting muscles must be kept strong so's they can do their job and prevent further problems. Exercise does not have to be marathon training. On the contrary, gentle and often is what is requires as the page on exercise here will tell you.

    Dieting? I can understand you'd like some support with it and I can also understand that, with very limited resources, the NHS can't offer it to everyone. Sometimes it's just a matter of finding out what suits us. My husband is currently losing weight very slowly on a diet that would drive me mad. We're all different. If you'd prefer a group I'm sure there'll be one in your area. If you're only 'a bit' overweight why not try my tip? If I feel I need to lose the odd pound I simply don't buy any biscuits, cakes, crisps etc. What I don't have I can't eat. And, besides, fruit is delicious at this time of year when it hasn't travelled far.
  • peppar
    peppar Member Posts: 7
    edited 30. Nov -1, 00:00
    So I finally got my referral to a rheumatologist. Was it worth all the endless xrays, blood tests, urine tests, heck no. He was so arrogant, without even having my records to hand, he gave me a quick look, asked me to summarise my symptoms quickly, had me push my palms together and asked me to tell me where it hurts (ankles, wrists, knees). And then said, oh, it's lucky you're flexible, but then also you're unlucky with that later one. I would say you have carpal tunnel syndrome and need steroid injections (today) in your wrists and you're peri-menopausal, well then it's HRT for you.

    That was it! I had the steroid injections, I don't care about injections, he said you might have some pain for a day or two, but then we'll see if it solves your wrist problems. Boy oh boy was that an understatement! the pain was unimaginable, I couldn't use my hands properly for three days and the two weeks later, nothing has changed, I'm as creaky as ever!

    I was hoping for some kind of diagnosis, but all I got was dismissal and a lack of interest. At this point, I feel like giving up on NHS and look for natural alternatives.

    Has anyone else had a similar experience?

    PS he dismissed MSM & Glucosamine supplements and doubted the benefits of cod liver oil (which I swear by)!
  • frogmorton
    frogmorton Member Posts: 28,079
    edited 30. Nov -1, 00:00
    Oh gosh poor you Peppa :(

    The fact he said we'll see whether the injections help with your wrists does maybe imply that you will see him again. If you do please don't go alone you need support I think it stops you being fobbed off in my experience.

    I thought we needed nerve conduction tests to get a carpal tunnel diagnosis! I am so sorry your wrists were so very painful after that injection :(

    Hmph and how dare he say you are peri-menopausal and need HRT?? What if you don't want to take the risks with HRT that is absolutely a personal decision and a bit sexist if you ask me. He wouldn't have said it to a bloke!!

    Big GRR!!

    Some ((())) of sympathy from me

    Toni xx

    PS if something helps you and isn't doing you harm no-one should poo-poo it.
  • stickywicket
    stickywicket Member Posts: 27,106
    edited 30. Nov -1, 00:00
    I'm sorry you had such a negative experience with the rheumatologist, and with the steroids. Steroid jabs often don't help but I can think of only one person on here for whom they actually made things worse so you were doubly unlucky.

    However, when you ask “ Was it worth all the endless xrays, blood tests, urine tests” the answer has to be yes. Some tests simply rule things out rather than in but the results are just as valid. I think, however unappealing, you probably have your diagnosis. If he doesn't want to see you again he must feel you don't have an inflammatory form of arthritis but OA which is normally treated by GPs. It would have helped if he'd made that clearer. As for the menopausal stuff – I think a chat with your GP would be your best course. Of course you don't have to have HRT if you don't want it. I've never heard of a rheumatologist prescribing it before.

    I really wouldn't bother looking for 'natural alternatives'. If they worked we'd all be on them. But, if you're determined to, do read these first. https://tinyurl.com/y7xxduva

    https://tinyurl.com/ya4p3fhh .

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