Hello newbie here.....waiting for specialist, getting frustrated

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I started getting noticable symptoms about a year ago. I am 46 yr female. My doctor told me he felt it was osteo and basically there was nothing they could do however since about summertime my symptoms have increased dramatically. All the fingers on both hands are extremely painful with the middle fingers and ring fingers being the worst. Sometimes in the joints it feels as though they are about to burst from the inside out, other times there is a sharp zapping pain that seems to wrap around the joints from the outside. I am sorry I am terrible at explaining this. I have lost a lot of mobility in both hands. The ring fingers almost feel like they swell INSTANTLY in the cold. There is never any time of day it isn't painful it just depends how much. Sometimes I cannot even bend them without the pain being a 12/10. Every day I am so so tired. It is so frustrating. I have an appointment with a Rheumatologist in March for which I must travel five hrs to get to as the wait lists in my area is FOUR years. I am currently trying to manage my symptoms with NSAIDS and  paracetamol with very little success. I would like to thank all of you for all of the valuable information I have read so far. I did test RH neg, my doc did no further testing. I admitt I am really hoping for answers from the specialist as it is alarming how fast this is progressing. As a photographer, I need my hands to work and it is becoming more difficult every day......thanks for listening.

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  • Posted

    Hi,

    I am really in the PMR forum rather than this one, but I have learned a lot about RA since it seems to be better studied than PMR.  I just read that you can have rheumatoid arthritis even without RA, and the critical thing is your joints, and especially erosion of the joints.  

         I do have osteo in the base of my thumb, but generally not in the other joints.  I had an RA teacher when I was a little girl, and I still remember her hands:  all the fingers were 45 degrees sideways.  Nowadays she would be sent to a hand surgeon to reconstruct her hand.

          One thing that can help RA is statins since statins are powerful anti-inflammatories.  There is a really good clinical trial that looks at RA and statins, and it was quite impressive.  Statins are generally quite safe and much more benign than some of the other horrid drugs they might give you.  And statins also help osteo-arthritis type inflammation as well,  so this might be something you could suggest to your primary or GP.

         Here is a summary of the RA statin trial:

          A double blind, randomised, placebo controlled trial examined the efficacy of atorvastatin 40 mg daily for 6 months in rheumatoid arthritis. At the end of that period, patients who had received statin were found to have decreased plasma levels of lipids, fibrinogen and viscosity. The disease activity score improved significantly on atorvastatin treatment compared with placebo. CRP levels and erythrocyte sedimentation rate reduced by 50% and 28%, respectively, relative to placebo

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  • Posted

    First thing specialist rteumotogist told me was to go out and buy a big bottle of Odourless Fish oil, capsules, they are huge, but you do learn to swallow them, 2 for breakfast, 2 for lunch, and 2 for dinner. with food, you seem to get less reflux that way, takes a while to start working, but gives me huge sense of less pain.

    Bonus effects, no dry skin, micro lines around eyes have gone, hair instead of being dry and brittle, and constantly pouring on the conditioner, if anything it is greasy now. I keep it very short and wash hair every day now.

    Swollen fingers, have you considered you may have psorasis arthiritis, have you had psorasis on your skin, if soo a possibility, Dr specialist tells me thats what i have, but genetic tests come back negative, and do RA tests come back negative, but she tells me thats what I have.

    Symptoms, very swollen finger joints, knuckles expecially, and tissue fills up so much with fluid, that you can't even see my knuckles on bad days, and I cannot make a fist, difficulty holding a pen, opening small bottles almost impossible, you can get arthiritis aids, which I have done.

    Their are lots of different meidications that can help, its just a matter of finding the one that will work for you. I have been through the chemist shop, and am now on methrotrextrate and Leflunomide, a pretty nasty combination, but my liver is coping, monthly blood tests, confirm.

    Can you get to a private rheumotogist, enquire how much, and get your diagnoses, then you also have another opinion, about what is going on.

    Your GP should be able to order up tests for ESR and CRP, if either of those if higher than normal you have a inflamatory response going on, then it is a matter of figuring out what is causing it.

    Hope all of this is some help

    Lyn

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    • Posted

      A little off topic (sorry) but you mentioned getting RA aides, does anyone know a website that specializes in RA aides? Right now I am trying to get a tankini to wear at the YMCA with a zippered front but only can find very expensive ones on the net. Nothing to buy around where I live. I've got a feeling I am going to be using zippers alot. It's hard to button clothes or get them over my head anymore.
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    • Posted

      Hi Lyn,

      Thank you so much for the reply. I will for sure try some krill. I too have wondered about diet and may try eliminating foods. This forum is a wealth of information.

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    • Posted

      You had an enlightened rheumatologist to tell you to go out and consume 6000mg of fish oil. Briliant!

      And 'a huge sense of less pain'....? Wow?

      I mean I've known about fish oil for a long time but no one's ever prescriped such high doses for joint pain.  Your man may be onto something important.

      It's not cheap though is it? Did the 'benefits' include diarrhoea or am I being pessimistic?

      I take 2000mg and can;t honestly say I know what the differences are.

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    • Posted

      Most decent hospitals have an 'aid' shop, where they sell a number of things for special needs. But not sure they go so far as providing special clothes.

      I had a huge probem getting into my socks, or sweaters over my head.... horrid. It will change though with treatment so don't spend moolah on stuff you won't use when you're well.

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    • Posted

      Just a thought.... If you're in London, Wigmore Street (W1), off Baker Street, used to have a slew of shops specializing in all sorts of special needs equipment, John Bell & Croydon being the best known (also an all-night pharmacist). That's because they're close to hospitals – or used to be – and right next door to the famous Harley Street.
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    • Posted

      Lisa - have tried Krill Oil, saw the advertising and thought that might help, or be even better, NOT A GOOD IDEA, in my case deveolped the most severe case of heartburn, neighbour was also the same, when we were discussing our aches and pains one day, she was taking Dr prescribed medication to help with heartburn. I suggested she get rid of the Krill oil, and just try ordinary odourless fish oil caps instead, a couple of weks alter came back and said the kearburn had gone, and she had been able to also stop taking heartburn meidaciton.
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    • Posted

      Light - some benefits for me, unexpected are that my skin has improved out of sight, no more dry spots, my shins especially used to be terrible, like having paper dry skin, never used to be that way, but as I have got older become worse.

      Extra benefit is that my hair is back to where it used to be when I was a teenager, lovely and thick and a little bit greasy, I must wash it every day now, but I keep hair very very short, like a boys hair cut, and just wash it under the shower aka boys style, when I get up in the morning. My skin around my eyes doesn't seem to have as many lines. I think my rheumo being a woman, understands that us girls, like to try and feel nicer with looking after our skin tone, and reducing wrinkles.

      Never had problems with diarrhoea, but I always take with food, I seem to have less reflux that way, like burping fishey taste, nasty.

      I notice when I haven;t taken my fish oil, my unaffected joints or closer to lessor affected joints seem to be more achey, and then when I go back on fish oil I have less pain.

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    • Posted

      Might be worth talking to my pharmacist about. You are making a lot of sense......I would hate to have tummy troubles on top of everything else. I am the same as you right now, my shins are awful and I find my hair doesn't grow at all...............
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    • Posted

      6 x 1000mg odourless fish oil, a day, 2 with each meal, 6000mg a day, I know sounds an awful lot.

      Only danger is if you have high blood pressure, that warning is on the side of the bottle here in Australia. As I understand it that amount of Fish Oil can drop your blood pressure, so if you are already taking blood pressure tablets you have to work with your Dr, and adjust your blood pressure medication.

      Only other issue I have come across is you have to come off them a week before surgery, as they act as a blood thinner, I expressed my disappointment to the hospital chemist when she told me that, and she said I could start them again the day after my surgery.

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    • Posted

      My haridresser when she cut my hair last week commented, on I have two or more heads of hair, she commented there is so much of it.

      Almost pure white now, My Mum had pure white hair at 40, so I inhertied at least some of her colour, or lack thereof.

      I used to colour it as it started to lose colour in my late 30's, but gave up after I had a nasty reaction, to dye. Enjoyed the in between stage, as I had a lovely white halo around my face, and the rest stayed darker.

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    • Posted

      I think about a month or so before I really noticed the differences, for my hair maybe as much as three months, over the long term I notice when I don't take them, forgot them when I went on holiday, so thought, it won't matter that much, but by the time a couple of weeks had passed, started to notice that shoulders were just a little sore, again, and I was having dry skin patches again. Good motivation to get back to my usual 6 a day.
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    • Posted

      I realize that everyone's symptoms I am sure are different and I am currently undiagnosed but it does seem to fit....just seems to be happening so fast. Started with a middle finger on right hand, then left, then the last three fingers and now it seems the elbow joints are being affected too. One thing I have noticed lately too is that while my hands seem to be in constant pain, it doesn't seem to hurt as much grabbing things as it does when I release the grab.....does this make any kind of sense to any of you? THank you again for all the helpful info and insight. I finally feel understood.
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    • Posted

      Lisa - my Gp Dr thought my problems were post viral syndrome, Apparently our body can sometimes forget to stop fighting the virus it was attacking, and turn on our cartlegde, or other parts of our body, think its a bit of a grand lottery, what is attacked.

      They don't fully understand what is going on with auto immunine, some research in various countries I believe, maybe we can live long enough to hope they find the cure..

      Example, my sister and brother both have problems with auto immunine, as I do, my sister who is a very senior nurse, was speaking to me, at Xmas, like she said, yours was your hands for a start and then your hips, or maybe together, my brothers are only his knees, but he's in agony with those damned knees, or so he tells me, not looking foward to double knee replacement.

      I dind't have the heart to tell him it could be worse than hips re pain immdeidatly after, or so they told me in the hospital.

      My sister has some kind of growth on her tongue, that has to be removed (the growth), already been removed once, that too is an auto immunine issue she tells me.

      Family llinks, yes possible, my uncle had double hip replacement in his 80's as well.

      Not fun I know, and its worse when nobody is listening, you have lots of friends here on this forum, they are a great bunch and allow us to have our little cry out loud.

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    • Posted

      Hi Lyn, I've been investigating fish oil (once again!) and I notice there's plenty of recent publicity about the quality of the capsules.... their content vs how much actual omega-3 is in each capsule and so on.

      Now I bet in Oz there's reguation and all kinds of things, but where I am now (India) there's none whatsoever for supplements.

      But I can source it overseas, UK and the US. So now Im going to ask you to name names, ie brands... because obviously you've found a quality brand if 6gms a day is doing that much for you, so could you say what your brand is and I can check if its available where I can get it.

      Thanks!

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