Anyone else have these symptoms - not osteoarthritis so what is it?

[lurchermummy]

Hi I know you're not doctors but I feel like I'm going mad and wondered if anyone else has similar symptoms and if so what it is?

Joint pain - really sore knees, ankles, toes. Hurts to walk, hurts to kneel, wake me up at night, worse after being still for any length of time.

Had. X-rays, not osteoarthritis, not inflammatory arthritis either apparently. No swelling just incredibly tender and achy.

Occasional flare ups of Achilles tendinitis and plantar fasciitis.

Very poor sleep quality

Wake up a lot to go to loo

Restless legs

Very very tired (probs due to poor sleep)

Trying HRT but no impact.

Saw rheumatologist to see if psoriatic arthritis they said no.

Fed up of being in pain, it's affecting my work and my everyday life.

Doctors seem dismissive and just suggest physio - any thoughts?? Thanks

@Candyflosscrochet that sounds rough. It seems that so many of these sorts of conditions are so hard to diagnose and there are so many overlaps in symptoms. I think constant pain is so wearing, although yours sounds worse than mine, I don't really have backache thank goodness.

I think a renewed focus on my diet and exercise is needed, I have had an extremely stressful year and think my cortisol levels are all out of whack and yes probably too much wheat based foods and sugar.

Im intending to ask the GP for full bloods and maybe more investigations.

Thanks all for the comments, glad to know I'm not alone although sorry for those also struggling. Seems like so much can be attributed to menopause but also it's easy to write things off as being down to that whereas there can be other things going on too.

@Candyflosscrochet i think a private rheumatologist will be my next step. Even if I get past the gp next week it’s a year long wait to see one on the nhs.

edited, I’ve found the nice guidelines! Well I have five criteria for the hla b27 blood test. My worry is this would be negative and they’d refuse me an mri but I’d be one of the 10% who have AS without that gene.

I'm hlba 27 negative, but like you said there are a lot of people with AS that are. Even the rheumatologist said so.

Bit left field but have you had your ferritin levels checked? I had awful joint pain, went in desperation to a private endocrinologist who tested everything. My ferritin levels were off the charts, I subsequently tested positive for haemochromatosis (there's a genetic test).
6 months of treatment later and I felt great! Lost 12kgs which I needed to do.
BTW I'm 49 so assumed it was menopause but nope hormones all normal

Low vit d can also cause tiredness and aches and pains.

Have you had a DEXA scan?

Hi, I did have a Dexa scan a few years ago, showed mild osteopenia. GP was unconcerned and just said take calcium but I gather that vit D and K is more important and I do take that in a spray form, forgot about that. Don't know about my ferritin but that's a good idea thanks.

Sounds similar to the symptoms I had, my HRT has changed and 6 months on they've all gone! I'd gone from peri to post menopausal and the shift in hormones was causing havoc with my body. If I sat for more than half hour I could barely walk for the foot pain and leg aches. I'm a changed woman now! Please get it checked out - I'd almost given up hope and was really feeling depressed about it all, ages just 52 thinking that's it I'm done for.

Here you go 😉
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Look up Giant Cell Arteritis

Also dont neglect to check your feet and knees are in alignment when walking/standing, if you need insoles to make sure your feet dont roll in or out, that can bugger up your knees

Hi there,
It doesn’t seem likely that you have this from your post but for anyone else reading this I want to mention an illness called acromegaly. It is caused by excessive growth hormone produced in the pituitary gland.
Acromegaly can cause a wide range of symptoms, which tend to develop very slowly over time.
Early symptoms include:

• swollen hands and feet – you may notice a change in your ring or shoe size
• tiredness and difficulty sleeping, and sometimes sleep apnea.
• gradual changes in your facial features, such as your brow, lower jaw and nose getting larger, or your teeth becoming more widely spaced
• numbness and weakness in your hands, caused by a compressed nerve.
• periods becoming irregular
• fatigue
• aching joints

If you have these symptoms you want to see an endocrinologist and have your IGF1 levels checked. It’s probably not this. Acromegaly is a rare disease. Unfortunately that doesn’t mean it doesn’t happen. It’s worth checking if you have any concerns. The earlier it is caught the more likely it is to be curable!