Miserable : I didn't have another appointment with my... - NRAS

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Miserable

I didn't have another appointment with my rheumatologist until November 20th. Seriously, I'm absolutely miserable. Nothing is helping and things are getting worse again. I just called and moved it up to October 3rd.

My Mom feels that he's not being pro-active enough. I'm on Leflunomide and 10mg of prednisone for another week until I drop down to 5mg until I see him.

I woke up the last two nights in horrible pain.

Am I being too optimistic about getting better? It's only been maybe a month since I started the Leflunomide. I'm having to take a flexeril every night in hopes of being able to sleep and getting my spasms under control.

Really, I'm just whining, but it feels like I shouldn't be this miserable.

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LEF does not work for 12-14 weeks so it's way too early to expect any results. Be patient as no RA meds work straight away they are not like antibiotics.

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He did tell me, I was just feeling especially sorry for myself ;)

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Well done for bringing your appointment forward hopefully that will help.

As Medway-lady says none of the meds work quickly so it's a waiting game but there are things you can do to ease things whilst waiting for meds to get up to speed. Stress will make things worse so try and ease up and relax. I discovered sketching when 'waiting' and enjoyed that for a while. Gardening in short bursts or just wrapping up warm in my 4 season sleeping bag on dry sunny winter days and reading in the garden helped. Eat clean and healthy to try and keep weight down (not easy with steroids I know). Drink loads of water.

I hope things settle soon for you

Ali

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Great advice ❤️ what really happened was I did too much the day before. I still can NOT believe I can't even have a sort of kind of busy day without completely ruining me for a day or two following.

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You most definitely can lead a perfectly normal life. I'm in remission with LEF and my RA makes no real difference to my life now. I ramble, and garden, bird watch, swim etc and don't even think about it. I hope LEF works for you as bad news sells whilst good news is often overlooked. Just be patient and I'm Celiac too and promise you that going gluten free makes no difference but getting enough sleep does just like it does to the rest of the so-called normal population. Weight is obviously an issue as cheshcat sayes but it is vital to continue to stay as mobile as possable too.

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Thank you :) - this is inspiring to hear that you are in remission.

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Hi I agree with the others as patience is indeed a virtue in this game!

However I got my best appointment ever after feeling the Rheumy " didn't get me" by taking my hubby with me who told it like it was! Maybe you should take your mom!!

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I told my Mom I wanted her to come :) - I feel like I'm "bad" at being sick. I hate it and it's hard for me to tell them how bad I feel. I really need to ask for pain pills but it's such a pride issue.

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Fair enough but the only person who can be a true advocate for your health, your wishes and you long term care is you.

I found that writing notes 9f what I wanted to say of talk about helped and I have gave me a chance to get my thoughts together before the appointment.

Also if you need just hand it to the consultant and he will go through point by point.

If you disagree.. .they are NOT God's lol they are paid by you to help you !! So ask.

Yes have someone there if your mom or friend can't go then most hospitals do have an advocacy person who can accompany you!

Don't know where you are in the world but hope some of these tips will help you x

Feel better soon x

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Thank you :) - very helpful!

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