Referral to Rheumatology: I have lived in pain (joints... - NRAS

NRAS
26,264 members30,106 posts

Referral to Rheumatology

I have lived in pain (joints such as back, right hip etc) for years and have random pains all over the bloody place but thought it was 'just me'. Silly really. But recently my pain accelerated after trying to start running. My weight had been increasing and I couldn't work out why so started upping my exercise. I then found I could hardly walk in the days following any kind of exertion, then a patch of my left leg became (and remains) numb and my left foot suddenly became excruciatingly painful to walk on, so much so I found it hard to even drive. I went to the GP about a different matter entirely (the menopause... I'm 49) and mentioned all these other things while I was there. I said I thought it was normal. She said it was far from normal. I am in so much pain when I get out of bed from my back and hip that it takes me a good 15 minutes to stand up straight and walk normally plus none of my rings fit until mid-afternoon. I was sent for specialist blood tests and two came back with red flags. I was Vitamin D deficient plus the C-Reactive Protein test showed I had raised inflammatory markers. I have to go back tomorrow to go through the results with her and be referred to Rheumatology. I'm just wondering how quickly after this process you are diagnosed and if at the first Rheumatology appointment, you are diagnosed there and then? If anyone has any tips for diet and exercise that helps I'd also be very grateful. In fact, I'd be grateful for any advice as I'm feeling a bit sad at the moment. I feel too young to be given such a horrible diagnosis. I've told my mum I'm going to start smoking weed for pain relief. She gave me a jolly good telling off. She's 70. Lol.

17 Replies
oldestnewest

Sorry to hear about your problems. It will probably take a bit of time to sort out what's going on and what would be the best treatment for you as an individual.

If you put 'first appointment' or similar search terms in the search box, it will come up with advice that other people wrote previously on the same subject.

It's a good idea to write down what has happened to you so that you can give your history to the specialist in a short and straightforward way. Take someone with you if you can. Be prepared for waiting around and that you might be referred for further testing then or later. Wear easy to remove and replace clothes.

Have a look at the NRAS website too for information that's reliable. Don't Google and then get alarmed or sucked into the promise of instant cures.

5 likes
Reply

My mum is coming with me. She's had arthritis since the age of 3 so is a good person to take along. Thanks for all the tips!

2 likes
Reply

Hi, your story is very similar to mine except I left it till I was 58 to see my GP about it. My rheumatology appointment came through for 6 weeks after referral (not sure if all areas are the same though). I had all the scans, x-rays, further bloods, examination etc. done at the appointment and was given the diagnosis, a steroid injection, and a load of booklets to take home. I started the medication within 2 weeks after that.

I hope all goes well for you!

4 likes
Reply

Thank you for all of your advice! Sounds like it will be a long day!! :)

Reply

I had years of similar problems but finally got diagnosed with AS. That took about the 2nd visit to rheumatology after lots of tests. For exercise try pilates or yoga or just walking. Running is too hard impact on the joints. For women it appears that menopause/perimenopause increases symptoms of AS. Something to do with hormones.

1 like
Reply

Sorry to sounds so ignorant, what was is AS?

Reply

Ankylosing spondilitis. Or now named axial sponydilitis. It is an inflammatory arthritis.

1 like
Reply

I've just googled Ankylosing spondylitis and that sounds EXACTLY like me!!

Reply

I have AS as well. From initial consultation with GP to diagnosis was 12 months. This was mainly due to waiting lists. I was given an nsaid at my first appointment with the rheumy which worked brilliantly for me. All my inflammatory markers were low and still are. For me it was the MRI that showed the true picture - masses of inflammation, bulging discs etc. I was put on biologics pretty quickly once the MRI results were in.

2 likes
Reply

My inflammatory markers are low but I am Vitamin D deficient and am in chronic pain with my back and right hip mainly but both knees are sore, thumb joints, right shoulder and just general weird pains and numbness. I saw my GP again today has referred me and thinks I have inflammatory arthritis but 'isn't convinced yet', whatever that means...

Reply

My vit d was also deficient. My pain was lower back if standing for any length of time and left hip pain on waiting with general stiffness in morning which wore off as I started moving about. Classic AS I later discovered! Ironically I didn't even mention these symptoms to the go as the neck pain, knee and wrist pain were more troublesome 😀

Reply

That's me all over. Terrible pain and stiffness getting up which gradually wears off. Getting up to go to the loo in the night is awful as I can't hold wee in for long and I literally shuffle to the loo holding onto the walls sometimes. I feel 90!! The stiffness and pain is constantly there as is pain in my right hip / sacral joint but like you I have had it for literally years but never bothered to say anything to anyone. No idea why! I actually went to the doctors for spotting so I've had a scan on my pelvis today too. Thankfully that was all normal!! :)

Reply

I hope all goes well for you angel. You are certainly not too young at 49 to have one or more of the various forms or arthritis, when you think that even children can have it. I used to know someone who had a grandchild who was diagnosed at less than a year old. You say that your mother has arthritis and it can often run in a family. It is a long process getting a diagnosis but at least you are starting down that path now.

2 likes
Reply

My mum was diagnosed with juvenile arthritis at 3 which has progressed onto four other conditions and I am in the process of getting my daughter tested as she seems to be going the same way :( it's all a bit of a nightmare but as long as I still have wine, I am sure I will be fine :)

2 likes
Reply

Wine keeps you fine😆

2 likes
Reply

Certainly does. And gin.

Reply

I have my MMC I have DDD and fibro it seems and its great (the weed)! it does more for a cheering of the mind than actual pain releif but that in itself helps with pain ya know. I say go for it!! better with somthing with no side effects than big pharma drugs lining their pockets ;)

Reply

You may also like...