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

Could it be Lyme's disease? Are you in a tick bite area?

Hi thanks @Thinpigeon1 but no not really and no memory of ever being bitten

under active thyroid?

I would try different HRT. Sounds a lot like perimenopause.
Do you exercise?

Hi OP. I started to get similar pain after a operation and the loss of muscle mass.

I saw an osteopath who told me I'm hypermobile (aged 47!) which explains everything, my tendinitis in achilles and elbow, my sore knees, my clicky joints.

Could you be hypermobile? Are your knee cap wobbly? Google the symptoms. I fall into the hypermobile ehlers danlos. God knows how I got to this age without finding out sooner.

I think it's perimenopause too. Have all of this and Achilles issues are the worse.

Not on HRT but it improved a bit after having mirena fitted.

Have you done the physio? My Achilles issues much better when I actually do it every day ... but it's boring and time consuming so of course I don't

Oh let me also add, you should be using estriol cream vaginally which helps with needing the loo at night.

And magnesium helps with restless legs - I take more than the recommended dose, I use the attached.

I take three tablets instead of two.

Also make sure you are optimal for Vitamin D and B12.

Ferritin levels?

What did your last lot of bloods say?

Magnesium and a low carb diet, low in starchy carbs. I used to get aches and pains in all my joints, particularly fingers and wrists but cutting out bread/wheaty products was the biggest thing that solved that problem.

This sounds like me. I reckon I need to go in HRT.
from speaking to friends I’ve come to understand that there are lots of types of hrt, and that getting the right balance of hormones is pretty key.
and not necessarily something that happens with nhs hrt.
I also take collagen and magnesium, and almost always wear adidas ultra boost.

Yep,I have all this too. Take two of those magnesium vits. I had all the arthritis ruled out as well.

I've just started some menopause vits but remembered in the night that I cleared them off the counter and so haven't taken them since Xmas eve...
As in the night I go no sleep in....

How overweight are you?

I had all these symptoms and was diagnosed with Fibromyalgia, after a process of elimination.

Sounds just like me. I’m suspecting Ankylosing spondylitis and am off to see the gp next week to see what they think.

ive been fobbed off with back pain, SI joint pain, ankle pain for decades. The thing about waking up at night and being worse if you’ve been still sounds textbook for AS. I know you’ve said you’ve had X-ray, have you ever had an MRI?

im half hoping I do have AS as there’s medication which can help and I am so tired of being in so much pain. Maybe I’m grasping at straws but I am beside myself at the thought of being in this much pain for ever. I can barely walk.

i am hypermobile btw and have been diagnosed with EDS so possibly it’s just that. I do have a gene though which increases my chance of AS.

That sounds like a list of perimenopause symptoms, definitely persist with the hrt and keep having it reviewed if symptoms don't ease.

You've been misled. There is no magic Private HRT.

You need a source of oestrogen and a source of progesterone if you still have a uterus.

Anything else is just dose amendments.

I have 100mcg oestrogen patch, Mirena coil and Testosterone. All via NHS doctor. Have changed dose and delivery method several times to find what suits me.

What you might get via Private is a faster appt or a more sympathetic doctor if yours is no good.

Lurk

Peri menopause I guess.

Wow, so many replies thanks all. I appreciate it.

I'm 57 so not perimenopausal but definitely menopausal. I'm on bioidentical progesterone and estrogel, plus the pessaries although to be fair I've run out of those. I don't think I am tolerating the estrogel very well, it gives me intensely sore boobs, I have a GP appointment in Jan to discuss.

Yes I am overweight. I eat healthily and go to the gym, I also walk my dogs and have an active job but being active feels very hard at the moment.

Yes I do the physio - but it is very slow, he thinks I may have degenerative wear and tear to my meniscus but that doesn't explain the other random aches and pains or the constant aching in both knees.

I have tried every magnesium supplement going, not sure it helps.

Currently only taking turmeric, collagen, and plant sterols as my cholesterol is a bit high. Think I will request full bloods as not done for quite some time.

Not hypermobile as far as I know but my osteopath did say my knee caps track a bit off, I have been doing exercises to strengthen the muscles around my knee.

I did wonder about fibro but not sure my symptoms match up, the pain is more joints than muscles.

I have all the symptoms you describe, suffered for years. Recently been diagnosed with fibromyalgia. I do have appointments in a few weeks to look at immflamatory back conditions as got all the markers of those, but you've already been scanned to rule them out.
I sympathise, its awful being in pain and not knowing why. Maybe worth having a chat about fibromyalgia?

@Candyflosscrochet thanks - I've never had an MRI only x-rays and a blood test for inflammatory markers but that was a few years ago.

I think I will use my GP appointment in Jan to raise this as these were all symtoms I listed when I went to see her last and she said they could all be attributed to menopause.

The physio has definitely helped a bit with the more acute pain but hasn't resolved the overall achiness and soreness especially at night.

What is adidas ultra boost

OP I'm the same age as you, am on HRT and I have flare ups of pain all the time. Shoulders, forearms and hips in the main.

I weight train and that helps but I have to work around whatever area is hurting at the time.

I think it's tendons/ligaments. Collagen fibres that are affected by menopause. HRT is but a magic cure for everything. It helps enormously but it doesn't stop aging and the effects of menopause on hormones 100%.

I find cutting way back on any sugar or high carb foods, no alcohol, limit my caffeine, increase my protein and weight train really help but there are weeks when I am just in pain 🤷🏻‍♀️

Do you take painkillers for the pain? Does it help?

@lurchermummy it's so tough. I'm 41 and thought I was peri, but all tests are clear. Had all the blood tests for inflammation but also clear, although as I understand it, there are lots of people with ankylosing spondylitis who are seronnegative (doesn't show in blood tests unless in acute inflammation flare ups). An mri is the best to see this.
I have joint pain in my lower back, hips, sacroiliac joints, knees, shoulders and ankles. Daily. Constant. Morning stiffness and movement helps. I've been back and forward for years to physio, private osteopath and chiropractor. I can just about manage the acute pain in a daily basis, but its the constant aches that are driving me nuts now.
My gp was useless and their rheumatology referral was rejected due to an awfully explained referral. So went to a private rheumatologist who diagnosed fibromyalgia and wrote back into the nhs as I meet the the NICE guidelines for the criteria for a spinal MRi. It might 'just' be fibro, but until someone looks at my bones, it could be something else as well. I have lots of other symptoms that also cross iver between the 2.
It's such a long drawn out process!