hello everyone i'm new on here but have been lurking ... - NRAS


29,942 members35,803 posts

hello everyone i'm new on here but have been lurking for a while to try and get some answers as to how i feel, well here goes


it all started off with lower back painwhich i was told was wear and tear, then i started with pain in my feet, they told me it was connected to my back pain and i got pushed from pillar to post, after many xrays, MRI scans and ultrasound scans i finally got to see a foot and ankle specialist who looked at my symptoms ((tired all the time, foggy,forgetfull ness, pins and needles in hands and feet, cold sores in my nose, pain in hips, knee and wrists, swelliing on ankle and foot, plantar fascittis in other foot, i get so cold and im always shivering only a hot bath will help) and has told me i have got athiritis in one foot and def got an imflammatory disease and has referred me to a rheumatologist, im as stiff as a board and have got no energy what so ever, when the doctor tested me for RA my esr came out fine, sorry for the long rambling post but im so confused, some advice would be so welcome, jue x

16 Replies

Hello Joem welcome, Sorry to read about your condition. I am no expert but I do hope your appointment with the rheumatologist brings results to get back you

back on track. So keep pushing for your appointment. Sadly the fight to see the various consultants as & when you need them really can be very demoralising especially when you are struggling with fatigue.

I hope there will be others on this site with advice which will help. Keep in contact, you are not alone. Lots of love Alison x

Hi Joem . Im new to all this too..3 weeks in on MTX.. Everyone here seem like lovely ppl and very knowledgable to our awful condition... Hope you get some help and answers soon..x x

Poor you hope you get to see a consultant very soon. I don't show any problems in my blood samples either. i have sero-negative imflammatory arthitis .Hope thinds get sorted for you soon.xx

have a look at the description of ankylosing spondylitis. Its one of the forms of spondyloarthritis which is another type of inflammatory arthritis. Its a lot harder to diagnose because its seronegative (blood tests for rheumatoid factor and ANA are negative) and in a lot of people the inflammatory markers like ESR and CRP are also negative. There is typically a delay of anything from 7-10 years before diagnosis. It also frequently has enthesitis along with the back pain. Enthesitis is inflammation at the point where tendons join onto bone. Plantar fasciitis is a classic with AS, as is achilles tendonitis, but anywhere you have tendons joining bone you can get inflammation. There should be some good fact sheets on the NASS website (National Ankylosing Spondylitis Society. There are also two really good international message boards for AS and other spondyloarthritis - the Spondylitis Association of America and kickAS.org which both have folk who are really knowledgeable about the disease, but welcome folk with symptoms whether diagnosed or not. Doesn't mean you can't also hang around this message board. though.

First line treatment for spondyloarthritis is usually NSAIDs like ibuprofen, naproxen, etc, at full dose and taken regularly. Axial spondylitis (the back pain parts of it) don't respond to DMARDs in the same way that RA does (disease modifying drugs like methotrexate, sulfasalazine, hydroxychloroquine, etc), though peripheral arthritis can sometimes get some relief from MTX or SSZ. UK rheumatologist seem less willing to diagnose spondyloarthritis as early as US rheumatologists, particularly if you don't show obvious sacroiliitis on xray, which is the hallmark of AS.

If you have a long wait to see a rheumatologist, you might want to ask your GP to do a sacroiliac joint xray, and send a copy of the results to the rheumatologist in advance of your appointment. If you have bad enthesitis (like the plantar fasciitis) ask your GP about an ultrasound of it to show exactly where the inflammation is, as that might also help a diagnosis.

joem in reply to earthwitch

Thank you so much for your replies, I feel in limbo and when people ask what's wrong I cant explain, I feel abit more positive now and that people don't think im making it up in my head

Hi Jue, I hope they get you sorted sooner than later, it's the worst bit I think waiting on the diagnosis and having tests. I get plantar fasciitis and it's one of the things that causes me the most distress and I also get Enthesis and achilles tendonitis but had an mri and have no spine inflammation noticed, so I feel sorry for you, you must be fed up of it all. Painkillers help me a bit as do heat packs for me.

Hope they get to the bottom of it very quickly for you, and yes at times I think I am going mad too lol but your not, keep being strong and keep pushing so you get what u need. Keep us up to date! Hugs Axx

joem in reply to allanah

Ive got 4 yr old twins and I feel like its hard to do stuff with them, my joints are always clicking and popping, I didn't think naproxen worked but im finding ifni take them regularly they help, co codamol seem to work abit but im unsure if you can take them together, I feel like a right whingey bum lately, I get swelling but not redness with it? Ignore me if I seem random cause im all over the place lately, my memory is shocking and I can't seem to have a conversation without going off on a tangent or fidgeting what I was talking about, thank you sonmichnfornthe advice it really means alot x

Have you talked to your health visitor, they can be off help as 4 year old twins must be hard specially when u r inflammed and I know its difficult to take some of the painkillers when u r looking after them. Have u thought of putting them into the nursery or creche so you can rest or call in some favours, I know its harder with two but I bet your mates owe you one!!

Brain fog has affected me twice in my life once when the kids were young as there was too much going on, I had one then the other 9 month later and no I don't know how it happened!!! Then now with ra!! So yep brain fog is awful. But you know when they find out what's wrong they can work something out to help, sending cyber hugs xxxx


Good luck JoeM I responded to this on the question side already. TTx

how are you feeling today?

ive been keeping up with taking naproxen/cocodamol and the pain isnt too bad, even the PF which is always grrrr, feel tired as usual, the twins have just come home from nursery so im sitting having lunch with them at the min, my doc referred me to the gym and ive been this morn only did 30 slow mins, i know its supposed to help but it wears me out lol, i think i can cope with the pain at the min more than the foggy tired feeling, how are you all? hopefully having a pain free day :)

allanah in reply to joem

yes you will get fatigue whilst you are inflamed. bet you cant wait to start your treatment!!! And find out whats wrong , hang on in there , there is light at the end of the tunnel. Give the kids a hug from me, wish mine were that age again , hugs Axx

This all sounds horribly familiar - it is the worst time - before you get meds to help - but things do get better!

It is so hard.. The waiting to find out what's wrong. Weeks seem like months don't they.

well.. i had a good day yest, so i caught up with loads of hw while i felt ok ish, ouchy ouchy today cant win can you... wish the weather would warm up lol dont like the look of the forcast today, hope you all have a good day :) keep smiling :)


welcome.. dont over do it if not feeling well x

You may also like...