So desperate for help - chronic pain

[Realitea]

I’ve got awful knee pain. Both knees but one is a lot worse. Cant sleep, can’t work a lot of the time, can’t walk properly.
Diagnosed by orthopaedic surgeon (who never saw me but talked on phone) with anterior knee pain
X ray was clear
I can’t do the physio exercises as it’s too painful
I have a feeling it’s something else than what they’ve diagnosed
I get shooting pains in my hands and sometimes in odd places which are intense then disappear.
I have headaches a lot which I never used to have.
I have a nerve problem in my foot, same side as ‘bad knee’. I can’t extend my leg properly and if I point my toe the nerve pain is awful. I tried swimming but the nerve pain put a stop to that.
Just so many things and it’s getting me down as I like to be active but I can’t do anything. I’m just hobbling around. It got a lot worse last year but always had pain come and go in the knees.
It seizes up if I sit down for too long, I can’t lie on that side.
And a year ago I was sent to A&E by 111 for excruciating hip pain. I have never had pain like it and then that just vanished too. (Just as my period started which was weird)
I’m getting anxious that it’s something serious but my GP said to just stick with physio and it’s nothing to worry about

You need referral to a pain clinic and something like Amitryptiline or Duloxetinr which are used for long term pain.

Exercise little and often. Try walking for a few minutes then rest for 40 mins etc etc.

I was a teacher and had constant awful all over pain. I’ve left now, and a combination of rest and vigorous walking has helped me immensely.

Funnily enough I do take amitriptyline and have done for many years as it helps with IBS. I am a housekeeper so I am very active but I think my levels of activity or maybe specific things like climbing lots of stairs, kneeling etc are making it a lot worse
I was walking uphill the other day and something ‘went’ in the knee, the pain was awful and I was scared to move my leg again! Over lockdown things started to improve slightly but then quickly got worse as I went back to work
I don’t know about pain clinics, thank you for letting me know these exist! I’ll Google them now

The pain clinic can teach you how to handle it mentally and physically. They also have more drugs they can add in. Anti convulsants are often used.

I had excruciating pain once. I had to call for medical help as l couldn’t get out of bed and they gave me gas and air.

Again it’s all calmed down so much since I’m not rushing at 100 miles an hour.

I probably do the same amount of steps as l did as a teacher. But they help the pain now rather than aggravate it.

We have a Chronic Pain section now that you might find helpful www.mumsnet.com/Talk/chronic_pain

Thing thing that is ‘going’ is a muscle spasm. These happen when the body is trying to protect itself and when the muscles are tight which yours will be.

It’s absolute agony!!! And it takes about a week or so to calm down.

@ArseInTheCoOpWindow - thank you for making me laugh with your username I was just reading about muscle spasms wondering what they feel like. That must be it. The pain is unreal.

And thanks @Evenstar I didn’t realise there was a section for it. I shall head over there now.

I love my job but I’m thinking I might need to change to something office based. It’s a gloomy thought as I love working for myself.

I’ve just remembered something that I have and forgot to post - if I’m tired I have restless legs but sometimes it’s like an all over the body feeling of restless legs. I wonder if it’s linked. It’s horrible and I’m really strict about not staying up too late as the sensation is so horrible!

Are you menopausal?

Some anti convulsants for pain are great for restless legs.

I get bursitis of the knees. I pay about £25 a week for private physio for a couple of months. They do ultrasound and some exercises. The ultrasound takes the swelling down and they have me walking without a hobble in a couple of months. They recommended to me to wear shoes with firm soles and it has helped. Birkenstock type moulded soles, nothing soft or spongy. Aldi do a much cheaper version which is fine. But I was wearing fit flops which exacerbated the problems. I waited nearly two years to attend pain clinic and didn't find it much help. Some areas are better than others for it though.

Having just seen your update, maybe look up symptoms of fibromyalgia. It's common with those who have IBS.

I was thinking fibro too. I wonder if it comes on gradually. It does seem to be centred around the knees though. Shame I couldn’t have had an MRI. I was surprised they didn’t offer it.
@Grainjar this is exactly what I have been thinking it might be. I might see a private physio and see what they think. Can physiotherapists diagnose?

Physios can diagnose some things eg bursitis or recommend to your GP to do a scan or whatever, but probably after they've tried treating it. Both my shoulders froze overnight before I was diagnosed with fibromyalgia. The physio knew immediately I walked in the room it was a rheumatology issue and not frozen shoulders.