Hello.

Helsbells123
Helsbells123 Member Posts: 2
edited 28. Nov 2023, 14:05 in Living with arthritis
Hello everyone.

I am 47, nearly 48 years old and I was diagnosed with Rheumatoid Arthritis when I was about 18 months old following exploratory surgery on my ankle joint after my foot became fused in one position. To get this surgery my Mum had a real battle on her hands, there were lots of eaten words by doctors when they gave her my diagnosis. (Fortunately for me I did not have Juvenile Arthritis). My RA was managed for years with liquid Ibuprofen and then the tablet form, I later went on to alternative medications (such as Arthrotec to avoid stomach issues). I went medication free before trying to conceive and have pretty much stayed so since I had my son who is nearly 16. I have had to resort to anti-inflamatories and pain killers from time to time during flare ups, I also use a TENS machine and various relaxation methods some more sucessful than others!

Until recently I have also been a firm believer in mind over matter and I think that as I have had this condition for so long, I have just got used to the discomfort, pain and restricted mobility.

I do have the odd flare up from time to time when I have to admit defeat, I am currently in the grips of one! I have had to give in this week and have time off work because of my RA for the first time in about 6 years. I must admit that I am concerned things are getting worse and having read some articles (I know you shouldn't believe everything you read) I think there may be a connection to the fact that for the last year and a half I have been perimenopausal.

I have not been to my GP this week, have not gone to them to seek advice for ages to be honest as they seem to offer very little options.

I thought that now would be a good time to reach out for support and information from others who know what I am experiencing and I look forward to having lots of interesting and fun chats.

Best wishes.

Helen.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Helen and welcome to the forum. You are right, this is a good place to come for support, info and chats. Hopefully you will find others who share similar experiences. Sorry to hear you are finding things more difficult lately. People with long-term illnesses of any kind tend to get rather accomplished in adapting to and putting up with their symptoms and I know it feels really hard when suddenly the symptoms you were dealing ok with get even worse.

    There has been research into whether menopause may worsen RA or trigger its onset - possibly because oestrogen levels drop at this time and RA is thought to have a hormonal link. Anecdotally, women can find symptoms worsen during menopause, so possibly it could be the case that moving into peri-menopause may be affecting your RA.

    I'm including this link to the Versus Arthritis section on Rheumatoid Arthritis. I'm sure after a lifetime of living with the condition you know a huge amount about it, but there are sections on managing your symptoms and living with rheumatoid arthritis that might be worth reading as they include tips on managing symptoms during flare ups.

    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    There is a search function on the green toolbar at the top of the forum, it might be useful to search for e.g. "menopause" to see what others have been discussing on here.

    Sorry to hear your GP isn't particularly helpful. They do seem to vary so widely in their understanding of arthritis. It might be worth going just to try and push for a referral to discuss the worsening of your symptoms. Also possibly to try and get a referral to a pain clinic, if that's an option?

    Best wishes, do keep us in touch with how you're getting on,

    Ann
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I began psoriatic arthritis when I was 37 (it was accurately diagnosed when I was 46), OA was diagnosed when I was 52 and fibromyalgia at some point: can't remember when and frankly don't care. I was born with auto-immune junk so none of this is any great surprise alhough the OA came as a shock.

    I have never been healthy and am also a great believer in mind over matter (I do mind but that doesn't matter) but, on reading your post, find I cannot relate to your experience of auto-immune arthritis. I have never had so little medication for so long (you don't mention seeing a rheumatologist or DMARDs, only anti-inflammatories which do not affect the activity of the immune system) and pain has been a major factor for many years as more and more joints have been affected. Mine has changed how I have had to life my life but I have not allowed it to affect what I get from it.

    Who diagnosed you with RA? It is not unknown for JIA to morph into RA in adulthood but I have not come across a child being diagnosed with RA. I think the youngest we have had on here was an 18 month old boy with JIA whose mum had to inject methotrexate as he was too young to swallow tablets. Poor mum and poor boy. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Until recently I have also been a firm believer in mind over matter and I think that as I have had this condition for so long, I have just got used to the discomfort, pain and restricted mobility.

    I have not been to my GP this week, have not gone to them to seek advice for ages to be honest as they seem to offer very little options.



    Hi Helen and welcome from me too :)

    I, too, am a believer in mind over matter but, like any other mantra, it does have its limits. There is no way that, even with my regular exercises, I could have stopped my knees and hips deteriorating to the point where they needed replacing. I think you're absolutely right that we can sometimes get too used to the vicissitudes of arthritis and we actually put up with stuff we shouldn't (as my podiatrist warned me this week :lol: )

    As for GPs - no, they can't offer much for autoimmune forms of arthritis. Their job is to refer us to the specialists who can. I'm amazed you've got away with no DMARDS for so long. I was diagnosed at 15 when DMARDS were in their infancy which is why, twenty years on, I needed both knees replacing as OA had set in where the RA had done its damage.

    Does it matter what is causing your current flares? Being perimenopausal or just life? People flare at all sorts of times for all sorts of reasons and none. I had an abysmal time after both my pregnancies. Stress, too, can cause flares. Anti-inflammatories just won't cut the mustard. We need the meds that actually hold back the disease and only rheumatologists can prescribe them.

    I really would urge you to ask your GP for a referral asap as it will take weeks, if not months, to arrive. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright