Arthritis/Lupus.....whats wrong with me?

[Daisycat22]

I'll try to keep this a brief as possible but a lot of history!

I've been suffering from lower back, hip and neck/shoulder pain for about 2 years now. Went to my previous GP about it and they just said it's muscle strain, take Ibuprofen and get on with it, so I did.

Anyway, over the last 2 years the pain has steadily got worse, recently I have been woken in the night with terrible hip pain and sometimes drenched in sweat (NICE!), I have stiffness after sitting/standing for longer than 20-30 minutes.

So I visited my new GP recently about this as it's starting to get me down and she has referred me to a Rheumatoligist (appointment this week). She indicated I may have arthritis, not RA as blood tests came back negative, but osteoartritis but she thinks I'm quite young to have it (36).

So, I googled my symptoms (I know I shouldn't have) and I'm really worried now I might have Lupus.
I have been experiencing little symptoms over the years but never put them all together, these are:

• Mental health problems, (mood swings, depression, poor memory, agorophobia)
• Fatigue (physical and mental)
• Bladder problems (can't retain urine)
• Mouth ulcers
• Hair loss
• Weight gain and loss (rapidly)
• Night sweats, headaches and the joint pain.

Just wanted to know if anyone here suffers from arthritis or lupus and have any of these symptoms?.....and how was you diagnosed?

Poor you - you sound really under the weather.
Have you ever had your thyroid checked?
I've had almost all those symptoms (apart from hair loss, and bladder probs), with hashimotos thyroid disorder. You could ask your doctor to check your TSH levels, and also see if you have any thyroid antibodies present. I first realised I had it, when I had joint problems, including a very painful left hip. Might be worth investigating - it's a very easy blood test to do.

I'm going through this at the moment and im 24.. Same symptoms as you but I've tested positive for anti nuclear antibodies but negative for dsdna which is quite specific for lupus. I've got my appointment with rheumy in November. Please keep us updated

Sounds awful! Another thing to consider if you already know you have OA spine: you could get a lot of odd symptoms, plus tiredness and pain if there is any pressure on your spinal cord (clumsiness, feeling spaced out and very slight loss of balance being some of the often vague and confusing symptoms I had as a result of OA of my neck and spine). My GP didn't take it seriously at first because my symptoms looked a lot like they were simply stress related, and at that time my neck wasn't particularly painful. Then I had a nasty fall where I really hurt myself and had to take time off work due to neck pain. I insisted on an x-ray and full scan of the whole spine, and then it was clear that the damaged/slipping vertebra and discs, particularly in my neck, were the primary cause of a lot of the problems. I was finally diagnosed with cervical spondylosis (OA neck) and severe OA of the whole spine, hips etc etc (had the skeleton of an old lady said my dear surgeon). Some symptoms, like mood changes and mild anxiety probably were partly stress related but as a direct result of not having a diagnosis and trying to carry on as normal! After diagnosis, and seeing the neurologist and spinal surgeon, I learned what I could and couldn't do, what aggravated the symptoms, and was able to start to manage the condition. I recognise quite a few of the symptoms you have, but also there is no reason why you might not have two seperate problems going on at the same time as well, including a stress reaction brought on by having to cope with undiagnosed symptoms, or even peri-menopause! If you don't have a diagnosis after getting a serious range of blood works done, like your antibodies and thyroid function, it may then be worth getting your neck looked at if you know you have some degree of OA already. If you spend a lot of time sitting at a computer screen you may be aggravating a neck condition as well. I have also been screened for things like lupus, and had some odd antibodies floating around for a few years and they found this after investigating for repeated miscarriages 15 years ago. It was said to be similar to, but not, lupus (?? Hughes syndrome). These antibodies are not currently showing on my blood results but I am told that the condition may fluctuate and may even have been part of the initial cause of my OA. Sorry if that is too much information. Just if you don't get anywhere with the blood tests, maybe get your neck checked out.

Thank you for all your replies.

MrsMellowDrummer...I had my thyroid checked about 18 months ago and it came back normal, maybe I should ask for a repeat test now?

crazymare20...testing positive for anti nuclear antibodies, what does that mean exactly?...I had some bloods done recently but I think they were only for RA, I'll have to check that though.

apismalifica...I haven't had a diagnoses for OA yet (seeing a Rheumatology doctor this Thursday), thats just what my GP indicated. Did your Xray show anything?...my old GP reluctantly sent me for a Xray only of the hip (never mind about my neck or back!) about 2 years ago and it showed nothing, so he refused to send me for an MRI after that and said it was muscle strain!....Hopefully the doctor I see on Thursday may be a bit more forthcoming!

Yes there are very obvious changes visible on x-ray of my neck/spine. Previous problem with my hip 15+ yrs ago did show degenerative change there as well on an MRI. GP's have generally been very dismissive though and I'd be on all sorts of meds for things I didn't have if I had listened to them lol (antidepressants, counselling, tranqulizers, strong pain killers etc all pushed my way in the past, but I don't like taking drugs, and I refused all that and got a diagnosis that helps me cope by non-toxic means). All very well for the GP to not want to spend the resources, but you do need to ensure you have a diagnosis or they might put you into the category of 'medically unexplained symptoms' that could lead them to dismiss future problems as just more of the same. Personally I found a diagnosis and explanation more helpful than any treatment as it means I now know how to self-manage and pace myself. There are some tasks I no longer do (like tipping my head backwards or sitting still at a desk for more than a few minutes, and I have had to change my job). The worst thing was stopping my jogging, which was aggravating the problem although I hadn't realised it, and I do miss that as I find it harder to keep fit now. I also have a cunning plan drawn up with the surgeon for if things get worse (I refused surgery on the basis of the risk at this point in time) and a stiff warning from the rhumy doc to take extra care not to get a DVT in the event of anasthetic/long haul flight/inactitity etc as I may have a greater risk profile. I felt quite let down by various GP's over it all, and it took a few years to finally get somewhere, but I have learned to ask for what I want more assertively, having researched the problem thoroughly before I even go to see them. The only down-side was having to pay more for travel insurance once you start seeing specialists . Having said all that, its also worth being open to the possibility that some of the symptoms may be caused by stresses in your life and it is your body's way of telling you to slow down, but until you are totally convinced there are no underlying physical problems that are being missed you do need to pursue a diagnosis. I hope you get somewhere with the rhumy doc, good luck on thursday.

Anti nuclear anti bodies are generally a sign of some sort of auto immune problem

My sister has lupus she has the telltale butterfly rash on her face is lethargic and sometimes has swollen internal organs

So....I had my appointment with the Rheumatologist today and here's how it went.

Started off asking me my symptoms, luckily I had written it all down so just reeled it all off to her. She asked how long I'd been experiencing them and asked a bit about my teenage years and also family medical history.

She then examined me standing and lying down. She said my urine had protein in it and some blood (i get frequent UTI's but don't have any symptoms presently).

She concluded that she didn't think I had a serious underlying condition, I asked if she meant cancer and she said yes. She said that because of my age she doubted very much it would be cancer (I thought you could get cancer at any age??[hhmm]. I asked if she thought it might be OA she said no.

She has ordered extensive blood tests, sent my urine off to the lab and ordered a Xray of my neck and back. She said she thought it might be either an Auto Immune disorder or that I'm just experiencing chronic pain!

So got to see her again in 6 weeks time. I didn't mention Lupus to her as I know some doctors don't like it when you go in there and start telling them what you THINK you have, so I'll see what the test results are and go from there.

Hi Daisycat,

I've had very similar symptoms to you and went to the doctor thinking arthritis/lupus too and have been diagnosed with hyperparathyroidism. Have you had your calcium, PTH and vitamin D levels checked? It's a shot in the dark but I thought I'd mention it as I'd never heard of it before.

Update

I just returned from my follow-up with the doctor, heres how it went.

She said my blood tests came back "pretty much ok" and the xrays came back normal. I said, pretty much ok sounds like somethings wrong...she said one thing came back slightly outside the normal range but nothing to concern her.
She asked me all the same questions as before about my symptoms etc. I told her nothing had changed. I'm feeling really ill today as I have another UTI so I asked her has my urine sample come back ok from last time. She replied "oh, I decided not to send it off for testing as you had no UTI symptoms then" .....ok so it didn't matter that blood, protein and white blood cells were present in the dipstick?

Anyway she pulled me about a lot, caused no end of agony to me and then said that I may have a chronic pain problem which can be dealt with by physio....but before that she will send me for a CAT scan to rule out lymphoma, as I'm still getting the night sweats (even though last time she said I couldn't have cancer becasue of my age!)

I asked if the frequent UTI's (and been in hospital with a kidney infection) were an indication of anything she said she would send me for an ultrasound to check that out.

So basically she doesn't really have a clue what is wrong with me and I'm getting fed up with the whole thing!!