Lomo19645 years ago

Hi I am quiet new to ra I was diagnosed a bit before but still learning about this awful disease but from what I read it does get better and it did for me for a while but now I am having flares so new tablets are being added. I just wanted to say hi and to keep your chin up xx

BuffMummy in reply to Lomo19645 years ago

Hi Lomo thank you for you post it’s so reassuring. I’m going to try to beat this breast! 👊🏾

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Kai-- in reply to Lomo19645 years ago

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Warm hello, BuffMummy & Lomo1964! 👋👋

Abundant realistic hope, more than you can shake a stick 🥢 at ( healthunlocked.com/cure-art... ) — even for youngsters ( healthunlocked.com/nras/pos... ) nowadays! 😊

Please 🙏 take as good a care of yourselves as you possibly can, BuffMummy & Lomo1964, to return back to a physically & mentally healthy & active ‘new normal’. ☺️

Very best wishes to you both. 😌 🙏 🍀 🌺 🌞

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BuffMummy in reply to Kai--5 years ago

Hi Kai I would like to ‘follow’ you but don’t know how to? Do you know how I can do this?

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Kai-- in reply to BuffMummy5 years ago

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This ‘Help Centre’ article "What is the follow feature and how do I follow/unfollow people and posts?" ( support.healthunlocked.com/... ) notes how to "follow" a member, BuffMummy. 👍👍

The 'Follow' function for ’Kai--‘ is disabled on my end. (Sorry. 🙏😌)

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If ever you wish to see (‘follow’) my ‘Replies’, BuffMummy, just click: healthunlocked.com/user/kai... to see my replies to posts. 👍

If ever you wish to see my source ‘Posts’, click ’Kai--‘ & click blue text ’Read more’. 👍👍

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[To date, the 7️⃣6️⃣ source posts are Resources (an ‘accumulation of references’) I’ve found useful, insightful, informative along the way. It’s listed (‘cobbled together’) — like a (clumsy 🤪 ) 'Table of Contents' of a book 📖 for skimming. You're welcome to leisurely peruse 👀 anything that sparks 💥 your interest. Or, happily, voraciously devour 🍖 🐕 anything that has you hungrily seeking more. ☺️ Or, If it's simply 'not your cup of tea' ☕️ , readily by-pass/ ignore. 😌 ]

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Very best wishes, BuffMummy. 🙏 😌

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[Oh . . . there are many, many perspectives ( healthunlocked.com/nras/pos.... ) & variety of experiences of RA-ers (& multi-Autoimmuners) here to ‘tap into’. They’re from a wide variety of unique, individual experiences (all age groups, sexes, cultural backgrounds, etc.) from all around the globe 🌍 🌏 🌎 — (& rumour has it) from all around the galaxy 🌌 🛸 👽 ✨ . . . 😄 🙃 🤣

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popsmith18745 years ago

Welcome to the group and as you will find we are all here to help each other out but as the other posters have said it will get better as time goes by, I've had RA,OA and angina for 3 years now ,I'm on Methetrexate and a Bisomar called Benepali which had been working well up until Christmas but has stopped working so they are adding sulfazalasine to see if that will dampen down my RA and as you go on you will find that everybody's different with there levels off RA hope things get better xxx

BuffMummy5 years ago

👍🏾

kkminton5 years ago

Hi BuffMummy

I think you are my doppelgänger! Although my kids are grown I too “came down” with something awful last summer. It started with my hips and my hands and has literally rocked my world.

I am a very active person, and now I am learning new ways. I will be starting this summer with new exercise plans which include Bike burst, swimming, weight lifting, walking, and calesthenics. Absolutely no more running (this was heartbreaking as I coach a team of girls) or fast walking or kickboxing. I had to accept it or I would harm myself so much I would have nothing. Having nothing to do with my body and having to sit or lay down all day just kills me mentally.

Take care friends to find those things which bring you joy as depression can creep up on you and take you away. My doggies bring me such joy, even on the day(s) I cannot get out of bed. Everyday morning I meditate and wish for peace and healing for all of us.

Much love,

Your US friend Kimmy

Hidden5 years ago

I've had RA 30 years now. Yes, it can be a beast at times, but with a medicine regime that suits you, it can be tamed. I've had worse problems and still have, Bronchiectasis, Breast Cancer, Osteoporosis, Osteoarthritis, high blood pressure, and I'm still here. Disabled, yes, but I worked for years with children who were BORN disabled. Did I ever hear any of them moan? NO, they were a delight.

Hessie5 in reply to Hidden5 years ago

When we think we have it bad there are so many people who are motivators and just get on - you got to admire them. You are one of them. Wishing you all the best you are a true inspiration. - Hessie

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oldtimer5 years ago

There is lots of sensible and useful information on the NRAS website. And you can ask any questions here about specific problems.

Most people here post when they have a problem, so it often seems as if they are in the majority. But most people with RD are controlled on their medication and lead more or less normal lives. Treatment is so much better now than it was when I started this journey 40 years ago.

MandaJaneP5 years ago

Hi BuffMummy, I'm sure you'll continue to get a lot out of this lovely group. I empathise a lot with your being emotional - I think this is quite a normal part of coming to terms with the changes to your life that you haven't chosen and don't want. It will get better as you get used to the idea, and as you start responding to treatment you'll be able to do more again......maybe not the high-impact stuff though.

As part of my referral to the rheumy dept I was referred for six OT and six physio sessions, which were really helpful in showing me strengthening exercises etc - I'm able to do a lot more exercise now than I was a few months ago, and also learnt what kinds of activity to avoid.

Good luck on your journey x

summer325 years ago

Aqua aerobics pilates and Tai chi can all be possible I do think try and find something you can still do, I can do these when not flaring

Mmrr5 years ago

...yes it came on gradually, then suddenly......I'm still quite new to all of this too and trying to adjust to my new circumstances, the group's has been a great help.

helenlw75 years ago

Welcome to the group. I have learned lots of useful info from the group, as well as being able to share my experience of RA. I was diagnosed in 2004, but, like you I’m sure it started as a child. My earliest memories are of painful knees, described by the doctor as rheumatism.

LadyJan5 years ago

Hi sorry you are in so much discomfort. I wonder did you have a blood test to rule out polymyalgia. You symptoms sound very much like it.... having had it for 10yrs prior to diagnosis of sero negative Ra. I was on steroids for poly which worked well. Do get it checked next. Ladyjan

BuffMummy in reply to LadyJan5 years ago

Thanks LadyJane I’ll look into that going to see rheum nurse on Wednesday

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stbernhard5 years ago

Hello Buff, you may have heard about people with RA becoming disabled. I hope you have heard about people in remission. I am one of many. I have lead a normal life with very few restrictions. Gym 3 times a week, aerobic, resistance training for legs and upper body, free weights etc. It took four years to get there but it is possible for many of us. Regaining control of you life over RA is the most difficult step, little by little you will manage. I recommend the NRAS website as a source of reliable information. Its not very well designed, but if there is something you want an answer for and you can't find it, ring their helpline on

0800 298 7650. I wish you all the best, strength and believe for the better.

Sjhoney5 years ago

Hi Buff Mummy, I think you’ve just said what we all feel about this horrible disease! I was diagnosed 2yrs ago, altho my rheumatologist is a bit vague and I’m still not sure I’ve had a definitive diagnosis. I’ve been on all the meds which gave me horrible side effects so at the moment I’m on steroids and naproxen. I’m convinced it’s connected to menopause so am now on HRT, I figure it’s worth a try so fingers (painfully) crossed.

I find swimming really helps, it’s relaxing and takes my mind off the pain. I don’t think folk understand how you’re feeling, pain is so totally preoccupying as it affects every part of your life, especially someone like you who is very active.

I really hope you find a treatment that suits you and you learn to live with this nasty disease.

All the best 😊xx

Lincolnimp24575 years ago

Hi Buff Mummy like you and a lot of the good people on here I am still struggling to get control of my meds, I am on so much at the moment but still in so much pain with my hands, wrists, elbows and shoulders and hoping to have a change again when I see my rheumy tomorrow, I hope you keep your chin up there are a lot of very nice and helpful people on here so keep in touch.

Paul x

Nsmith135 years ago

Hi an welcome its lovely here so many kind and understanding people I felt so lost and confused by it at first abt 2 yrs now on all the meds and just not asking for a miracle just a little less pain an fatigue is a bonus and the support is amazing on this site !!!!!!!?

BuffMummy5 years ago

Oh stbernhard! You have made my day and given me hope👯👯👯 Thank you for sharing your experience. I’m determined to raise above RA

Hidden5 years ago

Dear BuffMummy,

I feel your pain and despair, for I am in the same boat! I was diagnosed in 2013 and put on

Meth. and Hydroq. Due to blurry vision, extreme light sensitivity and a sense of spacyness,

the rheuxmatologist took me of the hydroxychloquine. This did not affect the RA, but the

eye problems still persists.

As to our changed life style: I too was very active and that is now a thing in the past.

I mourn my loss of bodily freedom, but we must cope the best we can.

I don't think it is wise for you to return to your former high impact classes, for RA is an

inflammatory disease. Swimming and yoga are perfect physical outlets for this

disorder. When I become depressed, I go outside to smell the air and the scent of pine trees,

and go for a stroll and listen to the birds that sing in the trees. It grounds me more than

anything else. I also say out loud the prayer of St.Francis of Assissi. It's comforting.

Best wishes,

Zusje

Hessie55 years ago

Such a lovely message very uplifting - thank you for sharing. We are all in this together to help each other. All the best. Hessie

Nsmith135 years ago

We will give it are best try, we are RA warriors after all 🙅‍♂️!!!!