What's wrong with me?

[Debbierocket123]

I first started to get joint pain when I was 25. I've been to the doctor a number of times and they usually send me to physio (who sign me off within a few weeks whether I get better or not) or they prescribe temporary pain relief. I am now 32 and the pain has become unbarable. I can't sleep, sit, lie down, have sex or walk for very long. When I last spoke to my doctor she told me "if you can still walk, it isn't that bad" and recommended that I eat more vitamin D. I just want to know what's wrong and get a diagnosis so that maybe there is some sort of treatment that may actually help. I eat healthily and exercise every day along with yoga stretches afterwards. I'm really into fitness so the exercises the doctors give me seem silly and make no difference. I've told my doctor all this but they don't want to hear it. Does anyone else experience this? Is there anything I can do to progress this further? My partner and I want to start a family later in the year but my pelvis is in so much pain I am nervous about carrying. :( Thanks in advance x

fibromyalgia or endometriosis? Both notoriously difficult to diagnose (or at least usually take a long time to get to a diagnosis).
Whatever it is, a Dr telling you that if you can still walk it isn't that bad is not acceptable. It is not normal to be in that much pain on a regular basis.

Where is the pain worse? Where in the body did it begin?

Thank you for your answers so far! The pain began in my knees, then ankles and hips. My hips are the worst now but all of my body joints hurt.

Have you ever had a blood test for inflammation? (A CRP test?)

Have you had your blood checked for inflammatory markers? I was in an awful state before diagnosis of arthritis.

I am most likely way off but I figure you are interested in any possible explanations for undiagnosed pain! I have recently been diagnosed with axial spondyloarthritis which for me explained years of undianosed and/or misdiagnosed pain. It supposedly starts in the lower back, but mine was more knees/hips (then neck, elbows, shoulders...) Things that suggest it may be - any family history of psoriasis/colitis/chrons? Ever had blood tests that show you have inflammation (CRP test?)Pain worse or better at night?

Have you had your vitamin D levels checked? I had dreadful joint pain and couldn’t walk more than 20m without having to stop and my Vit D level was 7. The healthy range is 50 to 100.
After high strength supplements, the difference was amazing and I still take 4000iu every day.

I haven't had any kind of blood test can I just ask for one? Sounds silly I thought this was the Dr's job I haven't got a clue lol. I take a multivitamin most days - would this be enough vitamin D? I have had very severe hyperthyroidism in the past which one doctor said it may be related but I've since had my thyroid removed.

Oh sorry - it's much worse at night. When I'm moving around I don't notice the pain AS much but at night I am in tears with it.

You should ask your GP or specialist to do a blood test looking at vitamin D, iron and any other items that could have joint pain as a symptom.
I am really surprised that they haven’t done it already and have just told you to take more vitamin d.

If you are going to the GP with pain issues I would have thought they would at least run a few blood tests! Theres all sorts that could be ruled out (or in.) Im afraid I had a similar issue of little interest from GP and got most of my tests done privately in the end. There are all manner of companies that do private blood tests so if GP not helpful you could go that route, money allowing.

Debbie pain at night is another Axial Spon symptom.

Sounds like fibro from my non medical in anyway chair.

When you say you are really into fitness, how much are you doing?

I do HITT training with yoga stretches and sometimes the odd ballet class. Even though it hurts - it makes me feel better. I do about half an hour a day of exercise plus walking my dog but never any more than that.

I've been to the GP about 8 times now and they have never offered that. I don't make much money so going private isn't really an option.

MHA65 - I looked this up on the NHS website and it does sound like this. However, I don't want to self-diagnose in case I am wrong lol. Thank you so much though!

U need to push for a rheumatology appointment! Sounds like some sort of arthritic pain to me and it’s painful just like u describe x

I use medichecks to do blood tests if my GP won't listen.

ok, i'll add arthritis to my diagnosis if it started in your joints. Definitely push for a blood test. Can you see another GP?
i would also ease off the HIIT, if you're really doing it as high intensity exercise you shouldn't be doing it daily.

Thank you emmathedilemma (great name!) OK, maybe every other day on the HITT? It's not hugely strenuous just squats, sit-ups, running on the spot that sort of thing just to keep my muscles working really. I used to be able to do a lot more haha!

Ironically, on the other hand if it was AxSpA then exercise is an important part of any treatment plan since it is important to keep flexible and strong! I have DM'd you with a bit more info.

I'm so sorry you have this. Yes, it could be fibromyalgia but you haven't been given a diagnosis.

Try Glucosamine and MSM and cod liver oil. Calcium with VitD could be added.

Good luck.

Has it always been the same GP you've seen? If so, then might I suggest that you try a different one at the practice.

Please don't allow yourself to be fobbed off any longer.

Ive seen multiple doctors from different surgeries. They tell me the only option is physio, vitamins or go home basically and stop complaining. I feel silly going in so many times about the same problem but I really can’t go on like this for the rest of my life. I’ve asked for a diagnosis but never get one. It took 5 years for my doctor to give me a blood test when I had hyperthyroidism.

So the only things your GP has done is physio and painkillers. That would be fine if that was the first step but not after each time you’ve been with joint pains. I agree you need to ask to be referred to a rheumatologist. Physio won’t know for sure what is causing your pain. It could be rheumatoid arthritis, another type of arthritis, Hypermobility a vitamin deficiency. You sound to be in increasing pain and that warrants a referral. Fibromyalgia and ME should be a diagnosis only testing for other conditions. Don’t let them fob you off with more physio or a short course of decent painkillers. That’s not good enough.

Try an app called curable.
If anything structural is ruled out and the pain moves from place to place, there are strategies you can try to get rid of the pain for good.
I 'cured' my back, neck, knee pain of 15+ years in just a few months. Rarely take a painkiller these days, after years on them.