Almost at diagnosis point

Hello, I’m in the UK, male, 61, my partner is 51, female.

In early 2023 my partner started experiencing muscle aches on arms, knees and hips, a few blood test later & she was out down the pre-menopause and given some medication….. hasn’t worked 10months on.

I’m in reasonable health, high blood pressure ( under control) & type 2 diabetes and have limited mobility due to spinal issue ( cauda equina). but nonetheless I’m not complaining, I still function ok..

However, in late Sept 2023 with a bmi of 30.5 and weight of 106kg …. But since March I cut out pastries, sugar in drinks/sugar drinks, crisps, full fat milk, red meat and much lower intake of processed food , most breads etc….. so weight I did lose naturally.

Sept first I was 106 kg, today I am 97kg and a bmi of mid 29.6 , so 9kg lost in just under 4 months.

Towards the end of Sept 23 I woke one morning with my wrists almost unusable, knuckles painful and painful shoulders. We’ve had the same mattress for 17years and it had lost it’s springiness and with our ageing bones we put it down to that.

Oct 23 and I was struggling, no change in the aches and muscle pains, weight drop points little.

I visited my gp and had a lot of blood tests, all sorts, including erythrocyte, full blood count including white about 12 other types, most came back normal or borderline but some came back a normal, Two notable ones being the erythrocyte which was above the high level and platelet count the same, gp said it was clear I was fighting some kind of infection

I was then scheduled for another round in mid November along with a bowel check (stool supplied) ( on the limit but not over it ( blood in pop etc) so a check again in a month) and chest X-ray (clear) ( screening for myeloma etc). Results were much the same except the platelet count had lowered ( but still above high reference point) so was classed as ‘improving’ the same with the erythrocyte.

My gp given my described circumstances and blood tests stated it was looking like an auto immune disease and so referred me as urgent to a ‘rapid access’ rheumatology clinic at the hospital.

He did not prescribe any medication stating he didn’t want to distort any tests the clinic may order/take etc. I think he thought the appt would be soon.

I’ve now received the appt for the first week in March 24 and gp appts are difficult to secure but have managed to secure one for 2nd week in Jan 24 to see if something can be done

So that’s the timeline, apologies it it’s a bit long winded.

In the meantime I have not had a single day without discomfort/pain since late Sep 23, we changed the bed 3 weeks ago, no appreciable difference in sleep/comfort so far but nothing negative to say about it.

Most days my wrists are almost unusable for a couple of hours after waking, I then get some usage, my shoulders and my top of arm muscles are dreadful, seem to have lost some muscle mass, I tend to sleep on my side and in the previous mattress it felt very hard, with the new and a pillow adjustment I sleep head higher and my shoulders/top of arm are kind of supported, as a consequence I’ve not had my wrists as bad ( but still very poor) in the mornings. Sometimes this extends to my elbows.

There is no real swelling of the wrists at least not that I can tell but if squeezed ( same as knuckles) there is moderate pain.

My arm muscles give serious discomfort when moving the around in bed, the muscles actually feel sensitive to movement and in certain positions they really do hurt.

Some days, but not everyday the backs and inside none of my knees feel painful and weak, I sleep with a pillow between my knees to stop bone on bone at night, but some days I can hardly walk,they ease a little once walking/hobbling a bit but still painful.

My spine is ok but I suffer there anyway but some days I have an almost blanket pain right across the base of my back, it’s manageable just about, my tops of thighs outer give me discomfort and the some, again they feel week but usually they ease after a few hours but in all circumstances described the pain I’d intense most of the time.

Fatigue, oh my this is solid destroying, I wake , have breakfast, function for a few hours and then I’m zonked for a few hours, some days I can barely keep my eyes open so I sleep for a couple of hours and I’m ok for a while, this is the case 3 or 4 times a week.

I’ve tried to self help, I do some small arm exercises with a 1kg weight and the same with lifting lightweight to at least exercise my spine…..

On good days I’m functioning … just, other days I’m aching so much I cannot at times cope with it.

Sleep is continually broken, no more than an hour before I’m awake again trying to get comfortable , consequently this adds exhaustion to fatigue.

I’m seriously depressed with it all, I just wish I had something to hell combat whatever it is I have, pain relief is one thing and would help but I’d rather try something a little different but as yet nothing due to not quite diagnosed.

Depression is catching up with me,the black moods are very dark.

Is this normal? For so long? Should not things have eased somewhat? It’s literally been 3 months without a single bit of respite.

I have two teenage daughters, they’re missing their dad as I can’t do a lot, or sleeping or in bed resting up, my partner is missing my company and I miss them all terribly.

So that’s me, I’m sure there are plenty much much worse off than me but I just wanted to share, I’m not after sympathy either, I’m just at a loss what to do and worried this is permanent and because so long before any proper help my immune system is suffering irreparable damage.

Ps: apologies for typos/spelling mistakes, I can’t easily type so have used a voice to text app to help cut down on time spent, it’s not perfect.

Thankyou