Advice pls 🙏🏻Don’t want to end up crying threw apt and getting no where 😩

[Babano3]

Pain Clinic apt Tomorrow, anxiety is sky high about it,, Not been to see this specialist for 2yr! And can pain Clinic help with osteoarthritis? Was referred there for nerv damage in back/hip,, 4yr ago! Any Advice?? I am no good with all the medical terms ? Seeking any advice of how to handle the appointment without getting upset (and them thinking it’s down to me being depressed) am depressed because of pain and 4yr wait, then 2yr ago made to feel like it’s in your head , HELP IF CAN ANY SUPPORT ADVICE PLEASE ,, hope this makes sense,, no sleep for weeks 3young kids to look after, just a want some advice if possible xxxx

[rubina786]

Dear Babano3, your post made me cry. I felt really sad for you, I have Rhematoid Artheritis and know how constant pain can make you feel. So depressed and lost at times...I wish I could help somehow.

With me, after all the drugs they tried, methotrexate, hydroxycloroquin, sulphasaladine (sorry for not spelling them correctly) nothing worked and I weaned myself off them after a year and a half.

Am now on 5mg prednisolone no DMARDs which allows me to function. The pain is about 1 to 2 on a scale of 10 so its manageable.

Long term affects of preds are not good but I made the choice to opt with what works for my daily life.

All meds have side affects. Make sure you keep a diary of how you feel. What you eat. How stress you are...stress adds to pain so try and spend 10 mins a day watching something funny on YouTube!

At your apt. when you take your list of effects meds have on you, pain scales on a daily base (like blood pressure) your diet, your questions in writing you will be less likely to forget something and be less stressed.

They only give 10 mins (in my case) so prepare the most important info and questions top of your list.

You may only get a chance to ask just 3.

The bottom line is. You want to reduce the pain and damage in order to function. Right?

So if time, research what treatments are available. Before you go. See side effects. Suggest which might work for your condition.

I do not trust Doctors anymore sadly cause they are dictated by the govt. and pharmas as to what they can prescribe.

You need to be in control to decide what works for you and what does not and you can only do that if you research and keep a record that serves as written evidence as opposed to what they perceive as "verbal moaning".

Be strong and assertive.

Its your body your life and you need to take control.

If a drug does not work say so.

If you want to try another or additional treatment say it.

I chose to stop all RA drugs but a low dose of preds and did so. Its a risk I was and am prepared to take having tried all their suggestions which made many organs worse and was still in pain!

I would say listen to your body.

Start today.

Note down conditions on a daily bases

Research as much as possible about drugs you are on. What others are out there.

Write what makes you feel better,

What makes you feel worse. ..meds, food, tasks, events! Its a full time job I know!

Test diff foods for 2 weeks

Research and leave foods that don't agree with you.

At the end of one month even you will gather constructive data to help you and your doctor to treat you in a more informative manner.

They have a tough job with our illnesses as there are no cures so they say.

Make it easy for them not to treat you like a guinea pig but make every appointment count and be a progress in the right direction.

May God Bless you with strength and relieve you of pain and cure all ailments.

My prayers for ease in appointments too

Stress causes my pain to worsen. So please watch videos that make you laugh. It works like medicine!

Lots of love and hugs.

Rubina

[Crafty-Al]

Dear Babano

I totally understand how you are feeling, it's very scary meeting with these professionals especially when you feel so vulnerable, I get that.

Everything Rubina786 suggested is great advice, not sure what I can add except that 'these professionals' wouldn't have a job if it wasn't for us patients who have to suffer whilst waiting to see the very overstretched professionals. Does that make any sense, not sure I am wording this correctly.

Don't feel like you have to be rushed, write down all your points of worry, how you are feeling, side effects you are suffering with and most importantly, what you want from the consultant, if time runs out do not be afraid to say I had a lot more questions and things I wanted to cover, can I see you again in the next few weeks please. Also, when you arrive and introductions are made, say up front what you want him to do for you, how your pain affects your daily life, especially as a Mum, and also tell him he will have to speak in layman's terms as you don't understand medical terms.

You will find your consultant will be your most favourite person, my pain consultant is my favourite consultant!! You are making a relationship for long term care, let him/her know what you need and want. You will come out with a smile on your face, I promise!

Good Luck and there are a lot of people on here supporting you x x x

[rubina786 in reply to Crafty-Al]

True, doctors are very pleased when you come prepared.

[rubina786]

How did it go?

[Slivia]

Hi. All above v good advice. How did it go with Rheumatology Consultant?

I’m assuming you have had an MRI at some point in last 4 yrs. At our local

Rheumatology .there is a back pain clinic, with an

attached gym. However, the physio’s will not touch or give you any exercises

to do until you have had an MRI. & have been referred by a Rheumatologist.

We are v lucky to have such a good Rheumatology Dept. with excellent

Rheumatologists, locally. Steroids are good (Prednisilone) , but can cause

Osteoporosis, if taken long term. However, usually starting at a high dose

(I started at 15 mgs). then grad reduce down. It took me 2 yrs to come down to

1mg. But what a difference it made.

You can reduce the effects of Steroids by exercising or lifting hand weights, which you

can buy quite cheaply.

Hope this helps.

Best wishes