Late onset diagnosis

[Seasidesuki]

Is there a member in Sussex who would be able to discuss the options for easing severe joint and muscle pain. From my shoulders, arms, fingers, spine,, hips and I am really struggling to walk and get any sleep. Two shoulder cortisone shorts haven't helped. Any thoughts much appreciated

[gg317]

vitd helps me

[Mifford]

Hi I’m in Sussex but not sure I’m much help in sourcing pain relief! I currently have a frozen shoulder and it’s driving me to distraction it hurts so bad .. I’m waiting for an appointment with my doctor to get referred for a steroid injection to give me some relief from the pain for a while as the physio has had to admit defeat and accept that she’s causing me more pain without any benefit. I’ve had steroids into my hips on a couple of occasions and that has provided temporary relief so I’m hopeful.

Happy to help as much as I can though x

[Seasidesuki in reply to Mifford]

Hi, I also have a frozen shoulder and other shoulder is painful and compromised. Had cortisone injections in both shoulders a few weeks ago , it helped marginally but now pain is back. Is this to do with lupus, as I don't have a diagnosis yet.

[Mifford in reply to Seasidesuki]

Not necessarily as frozen shoulders can have a number of causes apparently. I also have an uunder active thyroid which can cause it and apparently people with diabetes are at higher risk (the physio suggested I get checked to be safe) or it can be from an injury or strain which makes you move the shoulder/arm less without realising ... or it can just be one of those things that comes out of the blue without any obvious cause. In my case the physio thinks it’s my lupus that has attacked the tendons in my shoulder that sparked it off but she is only guessing.

Have you asked your doctor to do an auto Immune panel of blood tests to see if they show what is going on with you? If not I’d say that’s the best place to start and then ask for a copy of the results so you can analyse them yourself and push for a referral if there’s anything unusual on there. Good luck

[SHEILWEIL in reply to Seasidesuki]

Hi, just curious. Have you had imaging done on your neck and/or shoulder/thoracic. Spine?

[Seasidesuki in reply to SHEILWEIL]

Hi, I had ultrasound guided cortisone injections. Didn't discuss ultrasound results with GP as there was way too many other medical problems to discuss and I am over overwhelmed. Also a shoulder x Ray discovered thinning bones which started investigation that lead to osteoporosis diagnosis.

[leslieliesel]

Hello Seasidesuki...what do you mean by late onset diagnosis?? If you mean age, same here. I was dx;d a few months ago at age 62. I had the pains that you describe and severe fatigue and a horrible chest, back, shoulder rash(if not for the rash, I was thinking age caused my symptoms..same with Drs)..I was put on (hate the stuff) prednisone and Hydroxychlora???.As I sit here 2+ months out, rash is gone, pain is for the most part NOTHING compared to before..fatigue that still slams me...not constant ,but I fell asleep sitting at the computer a few days ago....Anyhow I am tapering the prednisone(did I say I hate that drug??) and am on 400mg of Hydrox___(sp?).....Are you on medication??

[Declil in reply to leslieliesel]

I take prednisone regular it works for me full course start at 7 a day for week down to 1 a day for week it as side affects as i have severe arthritis and copd which i get chest infections

Sorry to ramble on Leslie

[Seasidesuki]

Thanks Leslie. That's helpful.

I have just been diagnosed with osteoporosis, so not sure if cortisone is going to make this even worse though.

[leslieliesel in reply to Seasidesuki]

Yep, No prednisone for you...in a way that is a good thing..I hate prednisone

[Seasidesuki]

Hi, no diagnosis yet, I am 59 years.

Recently diagnosed with osteoporosis, severe in spine. Not taking any meds for this yet as with my other problems still reeling from this.

I have face butterfly red rash, and rash on shoulder and arm on and off. Severe shoulder pain, since May , one frozen shoulder and the other on the way , thought this was Repetitive strain and work related.

Horrendous pain and stiffness and instability with spine, hips, front and back of leg with pain so can't walk and last few weeks limping and shuffling. Thought this was me needing a hip replacement.

Chronic dry eyes and sore lumps in gums, thought this was menopause.

Waiting for GP blood tests results. I went to GP three years ago with severe hip pain and was basically dismissed.

This time I took photos of my butterfly rash on face.

Grateful for your replies, feeling frightened by all this.

[leslieliesel]

I totally understand your emotional feelings....Waiting for the test results is SO STRESSFUL...Yet I thought my symptoms pain and fatigue was because of my age..who isn't tired and achy.....But the BURNING pain in my wrists and elbows...anyhow, if not for my rash I would still think my pain and Fatigue, was my age. SO,when I got my DX, I found out why I felt so crappy....My rheumy gave me another test that scared the heck out of me...fortunately all the markers were negative...Yea..I "only" have Lupus..UGH...Yes prednisone would be awful for you having Osteo...I am almost almost tapered off because I think prednisone for me is wrong...the other medication I take seems to be good for me.

I'll be thinking of you. I hope that you find answers ,so you can move forward with some kind of treatment..and feel...better than you do now

xx

[Seasidesuki]

Thank you for you kind, helpful thoughts xxx

[Chanpreet_Walia LUPUS UK]

Hi Seasideuki,

Welcome to the LUPUS UK HealthUnlocked Community!

Getting a diagnosis can be difficult, we published an article on our blog about ‘getting a diagnosis of lupus’ which you may find helpful: lupusuk.org.uk/getting-diag...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

To read our factsheet on ‘LUPUS: Bone Health & Osteoporosis’ click here: lupusuk.org.uk/wp-content/u...

Taking in photos of your rash to your appointment was a great idea! Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide: lupusuk.org.uk/wp-content/u...

We published a blog article on ‘pain management’ which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

Around a third of lupus patients have some sort of eye related matter such as ‘dry eyes’. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

We also offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Please let us know how you get on, all the best.

[Seasidesuki in reply to Chanpreet_Walia]

Thanks, all really helpful,

Regards