Hi from me - RA?

NHutch
NHutch Member Posts: 3
edited 29. Aug 2019, 06:40 in Say Hello
Hi all, I'm new to this forum and have joined as I feel I need some support/advice as feeling quite helpless/anxious. I'm 42 mum of 2 and have always been very active and loved sport/physical exercise. My problems started in the feet which have been getting progressively worse over the last 2-3years. I started seeing a podiatrist which didn't seem to help much. I then went to see a surgical podiatrist who suggested I see a Rheumatologist. After several tests (bloods, xrays, MRI, ultrasound scans), it showed I was CCP positive but with negative rheumatoid factor. My scans were a bit inconclusive and showed signs of bursitis as opposed to joint inflammation and consultant and sonographer seemed a bit miffed with my presentation. I've been plodding along over the last few years monitoring the situation with tests/scans, but during this time getting pain/stiffness in other areas of the body (wrist/hands, neck, jaw) also general muscle aches and pains. I feel this has got worse over the last 6-8months which during this time I have been going through a stressful house extension. I work from home as a bookkeeper and I feel things have become quite bad both emotionally/physically. It's really getting me down and I can't exercise like I used to which is not helping the emotional side (can only seem to swim really). My consultant saw some synovitis on the wrist at a recent ultrasound scan and said maybe we should start on Methotrexate/Hydroxychloroquine but after discussing this we said hold off while things settle on the stressful house extension. (He has also said I'm atypical presentation of somebody with RA so would have to monitor). I feel the outlook is quite bleak and I let it all consume me on a daily basis, I don't sleep well due to worrying and the discomfort. I worry about going on the Disease Modification drugs mentioned above due to their harshness/side affects but at the same time don't want to endure the daily pain. Are there other routes I can take at this stage or is there no alternative other than the drugs mentioned? I know there are so many worse off than me from reading through the various stories on this forum. But I feel my life is really on hold and I need to make some changes asap as my family life is now being affected. (My children are 10 & 6 and I beat myself up all the time as I can be quite short with them due to the worry/discomfort :-( I'm interested to hear of any of you in similar situations or any advice you can give. Thanks in advance and best of luck to you all on your journeys!

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi NHutch

    Welcome and thanks for joining.
    I sorry to read about everything your going through with your joints and parts of your body in regards to the RA flaring up etc.

    I have attached the link for the versus arthritis website. Please feel free to have a look around there as you might be able to find some comfort in reading other peoples stories knowing that your not the only one. I know do.
    https://www.versusarthritis.org/

    I have also attached the helpline phone number 0800 520 0520

    Hope to see you back on here again but please have a look at other forums as other people might have other advice and support.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I am not having too good a day so will be brief.

    I am surprised that no-one has thought that you could have a sero-negative kind of auto-immune arthritis. I have one of those, psoriatic, which I began completely incorrectly (no history of psoriasis, just eczema and asthma) and in the wrong joint (PsA is supposed to begin in the small joints such as toes and fingers, mine chose my left knee). I began the meds back in 2002 without a firm diagnosis and when that finally happened in 2006 it changed nothing whatsoever.

    Stress is a known aggravator of auto-immune arthritis (there are around three hundred auto-immune inflammatory conditions including the various forms of arthritis) so minimising that can help to reduce the worst of the symptoms. Sorry, my limited energy has run out - back later all being well. DD
  • NHutch
    NHutch Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you for your responses, that's an interesting comment dreamdaisy regarding sero-negative auto-immune arthritis. I haven't heard of that before an have just looked it up! It's interesting that they mention that some opt to avoid the prescription drugs and lean towards natural remedies and diet.

    I think at this stage I'm interesting at looking at alternative therapies (and if possible avoiding the disease modifying drugs). Do others take this approach and have you experienced any positive changes in your symptoms? If so what treatments do you take? I've read up on the benefits of certain diet changes, taking turmeric etc but it's finding a product that packs a punch , I currently take a daily does of turmeric with pepper (from H&B) but not sure it's doing much. I know the market is flooded with these type of products but it's finding one you can trust and that will have beneficial effects! I try to have a good balanced diet and as mentioned love exercise (although miss many activities I used to do :-( I don't smoke and my only vice being some vino and beer, but gather they may not help the symptoms :-( Be interested to hear if anybody has any good advice on alternative therapies. Thanks and hope your days improve. x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I think I can safely say that the majority of people on here have tried the 'alternative' route and not one of them has been able to report a complete cessation of symptoms. The placebo effect should never be underestimated - the mind is a powerful thing - but neither should the willingness of some to play on the fears and vulnerabilities of those in pain thanks to an incurable disease.

    In my very early days I tried acupuncture and - idiocy of idiocies - homeopathy. This was not a matter of just a few sessions, the acupuncture lasted around a year before I admitted defeat, the same with the homeopathy. I was driven to this by the fact that the medical world was ignoring my symptoms and by the time it was taken seriously it was far too late for the meds to be of any real benefit. I have no doubt they have slowed the development of the PsA but of course it has progressed and led to OA; thzt might not have happened if I had begun the meds in 1997 rather than 2002 but who knows? Overall I have had very little bother with the meds and their not-guaranteed side-effects - things have been tough in the past but so what? I got through. It's all part of life's rich travesties.

    I realise that the meds give me the option of leading the best quality of life that is available to me and that if the alternatives worked nobody would have arthrits. People do because they don't. DD
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    NHutch wrote:
    I think at this stage I'm interesting at looking at alternative therapies (and if possible avoiding the disease modifying drugs).


    :shock: Don't do it :lol:
    Seriously, if you have an autoimmune form of arthritis then you have a faulty, over-active immune system and all the supplements in the world won't alter that. When I was first diagnosed with RA there were no modern DMARDS on offer. The result was OA too followed by new knees, new hips, self-fused ankles and wrists and some finger and toe joints and other finger and toe joints that are hypermobile. Methotrexate and hydroxychloroquine have been my life savers.

    We do get people on here who opt for the supplement route then come back some time later, still in pain, now noticing joint deformities and reluctantly opting on DMARDS. If you're offered them, take them now. People worry about the potential side effects of the meds but, oddly,not about the actual effect of an autoimmune disease if the immune system is not reined in. i am proof that that's not a good attitude :lol:

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