Bit fed up

Hi everyone. Here's hoping you having a good day. I saw another senior registrar yesterday to review methotrexate dose increase. The essence of the conversation is

1 She doesn't think the methotrexate is working... Neither do I but she wants me to go back to 10mg

2she is not sure I have RA....so wants a repeat hand ultrasound which I had 2years ago

I'm not sure how I feel. Great if I haven't got RA....we would all wish it away but then why do I feel so crap and in pain. She thought because I get little swelling and nothing in blood results that means I haven't got RA...always thought it wasn't essential to have both. So a five week wait for ultrasound and then see the consultant after that. I have decided to give myself a holiday from methotrexate this week and reflect on what I want to do.

Yesterday deteriorated in the evening. I was trying contact lens for the first time . stupidly didn't try to get them out till six pm when opticians had shut. Well needless to say one got stuck which led to a restless night and an early visit to the opticians where she fished it out. Honestly feel a complete fool.... Hubby was sweet but as he doesn't think I should try lenses he wasn't best pleased. 😞

8 Replies

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  • Contact lenses take practice so don't be too hard on yourself! I've been using contact lenses since I was 18 and I'm now 51. If you leave them till later in the day, your eyes will probably be tired and a bit dry so you could try some eye drops that are compatible with contact lens use - ask your optician. They should help to make removal easier by lubricating your eyes a little before you take them out.

    The joint problems - I've had these for as long as I can remember. I've never had a positive rheumatoid factor and little in the way of inflammation in the blood tests. I was finally diagnosed with sero negative RA when I was 48. That was then changed to PsA about 6 months later and then another 6 months after that was diagnosed with spondyloarthritis with lymphocytic colitis. What I'm trying to say is just because there is little in the way of swelling or inflammatory markers, doesn't mean that you don't have some sort of inflammatory arthritis going on and they just haven't found the particular one that you have. Keep going, whilst it took well over 25 years to get my final diagnosis, I am now injecting humira and it has made a world of difference to me. They will get to the bottom of it for you but you have to be persistent.

    Good luck, Clemmie

  • Hiya I have sereonegative RA, & usually no inflammation in blood test results. Apparently I have no swelling in my joints either, although I would disagree with that. But we do agree that I have pain & stiffness, (don't get asked about the fatigue, which drives me nuts). So my consultant says this means I'm in the early stages of inflammatory arthritis / RA. Let's hope your consultant can get things sorted for you.

  • Did you get a steroid jab? As if that makes a big difference it does indicate that there's something inflammatory going on. Although of course that might damp down the inflammation so nothing shows up on ultrasound.....

    Put sounds very frustrating. Do arm yourself with resolve for next time you see consultant and push to find out what she thinks is wrong if not an inflammatory arthritis.

  • Hi Mary,

    One thing we know is there is a lot of uncertainty about what RA is, what causes it, and how to deal with it.

    The causes and mechanisms for inflammation are many. However, all of them have a cause and most of them can be removed. Removing the causes obviously cuts the chances of your body negatively reacting to a substance.

    In my experience the following work.

    Detox

    Raw food

    juicing

    Supplementation

    Meditation

    De stressing

    Grounding

    Parasite removal

    Leaky gut repair

    Correcting Intestinal dysbiosis

    Staying away from environmental toxins like smog and wifi

    Getting to sleep before 10pm

    Not eating after 6pm

    Adding anti inflammatory foods

    Being happy and having good relationships

    Allergy removal

    Cutting alcohol

    Cutting Sugar

    Cutting bread

    Cutting dairy

    Cutting white table salt

    Put all that together in a lifestyle and you will probably avoid just about every disease you can think of!

    Simple fact is, if you take all of the bad out and put good in you reduce your chances of having any disease to very low percentages.

    My RA is in remission, I have a letter from my specialist confirming this. However, if I really try hard I can bring about symptoms in my body.

    Why wouldn't I be able to?

    Doing the same thing over and over again (abusing my body) is bound to result in the same (RA) outcome, I'm sure you'll agree?

    So my point is....

    Is there anything you are doing in your life that you could change? If you have negative bloods you likely don't have RA. That is good, but one things for sure.... You are looking at direct message from your body that you need to change something that you are doing right now.

    Only change and removing the causes of symptoms results in better long term outcomes.

    Our bodies are breaking down all the time, our job is to take responsibility for health and make sure that doesn't happen.

    Letting other people take care of this is dangerous, and isn't the best option because it removes your individual responsibility to try and get yourself well.

    Maybe you just need some dietary changes and a new outlook to see new possibilities and outcomes other then being under a doc for the rest of your life.

    When I read your post I wonder...Why are you under a doc?

    You obviously have an issue, but is that issue "early RA" that could be avoided If you really went at health like your life depended on it...It does by the way. ;)

    To me it feels like you have a great chance to escape before the trap door closes. Take it!

    And is the inflammation in your wrist due to wear and tear?

    Have you tried eggshell membrane for rebuilding the cartilage and strengthening the tendons?

    I have had an ultrasound on my hands and wrists and can tell you that I am not convinced the machines are 100% accurate. The thing with them is that they are only as good as the operator and that interpretation is everything.

    I have zero inflammation but due to excessive exercise and other factors I can create inflammation due to the existing joint damage I have. When this was pointed out to my specialist she was adamant that it was active inflammation but some research and my own gut feeling was proof enough to me that the diagnosis are not always accurate.

    We discussed the way the new ultrasound doppler machine operates and the way it shows increased blood flow to and from the different areas of the joint. I am still not convinced that what we were seeing that day was active inflammation caused by active disease, but I guess we'll never really know because the signals were so weak.

    In conclusion, I would hit life hard and see if you can get yourself well before you need to rely on others to put you right.

    Taking out all the bad and replacing it with nourishing nurturing things will tell you one way or the other if you have a problem. If you do have RA , or anything else, and you build these positive lifestyle changes into your daily routine you have a great chance to live a long and happy life! Free not just from flares but also from the diseases that can travel with RA.

    Have a great pain free day and chat soon.

    Best wishes,

    Wade Tate

  • Wonder why opticians don't explain explicitly how to remove contact lenses?

    On the first day I wore them I was in seventh heaven seeing everything without my specs, but come bed time - like you I couldn't get them out!

    Luckily I had a (very good natured) neighbour who showed me how at midnight!

    Hope you got used to them &'are still wearing them!Tell your husband he looks so handsome when you wear them...that should get him onside!

    Kathy

  • Bless you, I empathise! all of my hospital appointments end up with me in tears of frustration and the dr/ nurse/ both looking at me as if I'm insane and a drama queen, and also querying their diagnosis ( I'm RF +!) i have no swelling but can't move my hands / wrists every morning and the bloods are ok . I think in their minds that means I'm lying about the lack of movement/pain . Mtx floored me wheni took it ( stuck with it for a yearat 20 mgs) and it didn't work. Now on triple DMARD, still crazystiff. my GP can't believe I'm not on a biologic. I joke with him that by the time I am I will have had to have stopped work, which will make acomplete mockery of their so called cost saving protocol! You do have to laugh. I might smack my knuckkes with a hammerbefore my next visit , just for a giggle LOL!

    Fortunately I don't have to have contact lenses though - they sound truly horrific! ;-) xxx Bless you, big hugs abd I'm sure uou'll get the hang of them x

  • I know my gp asked me to climb on bed to exam me stomach.. lol i couldnt climb steps he stood back no support to help me..i failed as i couldnt pick my self up to do it....gps a joke... must think we are lieing ITS GETTING WORST WOULDNT MINDED BUT HE COULD HAVE OFFERED TO HELP ME JUST STOOD BACJ AND WATCHED....TO MY DISMAY...JOKER

  • Disgusted i will never see him again...cheeky bugga wished me happy xmas on way out yea right no CARE....

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