The Long Wait……..

airwave

After a lifetime of widespread OA I’ve just had a chat with the respiratory consultant and her thoughts are RA is the cause of my lung fibrosis, I am now on the waiting list for an appointment with the rheumatologist. Unfortunately RA is having an increasing impact on my body and super sizing the levels of pain.

AT 67 I thought I had experienced as much as I could deal with, how wrong I am! One of my delights has often been a long soak in a hot bath but Mr Putin has put a stop to that with the cost of energy. After losing my mobility allowance to a bag of fibs from the Dhss, I think I should apply again? This is one winter I’m not looking forward to.

Rant over, it’s a grin, honest!

frogmorton

I've been wondering for years about you Airwave. You OA has been so widespread for such a long time.

Do let us know how you get on and i hope you get a really good rheumatologist 🤞

Take care

Toni x

airwave

I was referred to the rheummy a few years ago by my GP then by the Pain Clinic but they refused me an appointment, pity because the RA has obviously (to me) been happening for a few years now.

At present its a matter of ‘keep bu@@£ng on’ in the hope that something will happen. The Respiratory Consultant had me in tears when she said she was referring me to the rheumatologist, it was such a relief after years of pain. At present I am on the waiting list for a letter, if ever? To be honest the damage to my joints will be irreversible?

it’s a grin, honest!

stickywicket

Airwave, I'm so sorry. You have always dealt so well with your 'OA?' and been there for others.

I had a quick google and found this which you're probably aware of already https://www.blf.org.uk/support-for-you/pulmonary-fibrosis/causes

I think it's true that damage done is irreversible but you can take steps (medication) to slow it all down. Remember Julie on here from a while back? She's about to start rituximab for - I think - the same problem ie she now has rheumatic nodules on her lungs.

Please do re-apply for Mobility Allowance and enlist the support of C.A.B.

I hope you've been referred to the rheumatologist as 'Urgent'. Remember, you can offer to take a cancellation to get there sooner if they're still doing that in your parts.

Remember my brother's motto 'Illegitimi non carborundum'.

Good luck and hang on in there.

crinkly

Airwave I so hope there is soon an upturn in your situation - as there has potentially and entirely unexpectedly been in mine after a similarly long wait ...................

When first diagnosed with widespread OA more than 30 years ago (I am now 76) a spinal scan revealed a protruding thoracic disc and general narrowing of spaces between cervical, thoracic and lumbar vertebrae. None was sufficiently advanced to suggest treatment other than NSAIDs and making necessary adaptations to my very active lifestyle.

I changed my teaching role from PE to English before being forced into early retirement at age 50 when my school was unable to make concessions like allocating me a ground floor classroom but that at least meant my energy could be reserved for supporting our three teenagers as they progressed to adulthood - although the change in family finances had to be absorbed. Happily I was able to change my physically demanding voluntary role as a specialist horse riding instructor for one with a national telephone listening service, which I still do and which provides a sense that I can 'make a difference' for others.

In the intervening years I have stopped using NSAIDs because of side effects and have been told repeatedly that the development of frequent sciatica attacks along with chronic back pain were things I simply had to learn to live with - using strategies from a Pain Management Programme, Co-codamol and Amitriptyline plus a degree of practical problem-solving.

With great support from my husband I've stayed as active as possible. Reluctantly at age 65 I had to give up horse riding but have continued to cycle and swim for exercise although I've been a part-time wheelchair user for over twenty years in order to enjoy the outdoor life we've always loved and shared together.

Having moved house and talked with people in our new locality who have been treated for similar back symptoms I plucked up the courage to make myself known to the new GP practice. To my astonishment I was offered an appointment within two days and then referred for MRI scan with follow up by the Musculoskeletal Team.

Three days later I remain in shock but so very, very thankful for this further investigation of what now affects every aspect of daily life and meant I had resigned myself to becoming heavily wheelchair dependent in the very near future.

Now there is light at the end of my tunnel - a precious glimmer of hope that the long wait may have a positive outcome. Just maybe it's not too late for any of us to experience an improvement in quality of life!

janiebin

So good to hear your news, what a difference a new set of eyes has made to your life. No wonder you are in shock that was all very speedy. I hope it all leads to the improvement you hope for.

airwave

Thanks for your comments. One of the thinkings at the moment is when do I give in and use an electric scooter for longer trips? We’re off to the county show but I will spend most of the show sitting down (might even find a glass of cider?).

I must admit I get fed up with medical appointments you spend half your life waiting for something to happen.

it’s a grin, honest!

stickywicket

I really wouldn't see it as giving in, Airwave. If it enables you to do things you otherwise couldn't or to do things without (as much?) payback go for it. Just don't go getting drunk in charge of a scooter😁 But do have a glass of dry cider for me, though.

frogmorton

Get the scooter now Airwave!

It maintains independence and quality of life. Honestly I would get it now perfect for the County show😊

Let us know when you hear anything.

Toni x