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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.


  1. Sorry some tests came back as ‘abnormal’ not normal as described

    1. I don't have much more to add that what Richard already shared with you, but I do just want to say that we're here for you and you aren't alone! What you're feeling, given all that you're going through, is completely understandable. And I think a lot of people here can relate to and understand the challenges when you're trying to figure out what is going on and working on getting a diagnosis. It's amazing how much our physical health is tied to our mental and emotional health, so please be sure to take care of yourself and reach out to your doctor or a medical professional if you're finding the depression you've mentioned becomes too much. And, of course, please don't hesitate to reach out here any time. Sending you gentle hugs. -- Warmly, Christine (Team Member)

  2. Hi . Your frustration is absolutely understandable. Unfortunately, if it is an autoimmune condition you are unlikely to see improvement while you are not receiving any treatment. It definitely makes sense to ask your GP about what you can do given the time until your rheumatology appointment. There is quite a bit that goes into the diagnostic process and I want to share with you this article from our editorial team on the topic: Also, is it possible where you are located to get put on a cancellation list to potentially get your appointment moved up? I also want to share with you this article on "Natural Remedies, Vitamins, and Supplements:" I can't say that any of these will help in your case (we are not medical professionals) and it is important to speak with your doctor, but thought you might want the information as you look for something to help with symptoms until you have a treatment regimen. Hopefully others will also chime in with some thoughts. Wishing you the best and please feel free, if you like, to keep us posted on how things are going and to ask additional questions. Richard ( Team)

    1. Hey, the information my colleagues provided is great and they have important takes that you should definitely read. I want to come at it from a bit of a different angle, though, because I've been where you are. I can tell just by reading what you wrote and how you wrote it that you are overwhelmed, and that's a completely normal response when it feels like your body is revolting. Next, don't worry about apologizing or feeling guilty about what other "worse" people might be going through. Remember, this is what you are going through and probably one of the most trying things you've experienced, that means to you it's a lot, and you have every right to complain, be angry, afraid, upset, frustrated, and express it however you like! It's happening to you! So, I think, next steps, at least for me, would be to take it day by day. You wake up, take stock of your body, and then figure out how much you can or can not do that day. Next, for me, would be to see if there's any medicine or other remedies I can use to help with the pain or fatigue of the day in order to be able to exist a little better that day. If I need to reschedule things, I do - unapologetically. I stopped feeling bad about rearranging things a while ago because the truth is it's not a luxury for us, it's needed, and that's the main thing I want you to try to keep in mind. These are things you need just like any other human needs air, or food, or companionship - you need these accommodations and extras to be able to exist in the world and have a quality of life that any human deserves, and there's nothing wrong with that. As Christine said, the mental part of RA plays a huge part of the entire disease and part of that is not being hard on yourself. Often we are the ones who are hardest on US, and even if we think others are hard on us or are going to be, it's never as bad as what we do to ourselves. I have pushed myself too far beyond the limit and paid the price for the next week too many times to count. The kicker is it was never because of what others expected or needed me to do, it was always my own fear of disappointing people or not performing my "best." It's all baloney - you do what you can do without hurting yourself and that is enough. Period. Anyway I don't want to drone on and ramble so I'll wrap it up but just know we are all here to help however we can and you never have to go through this alone if you don't want to. Just stop, take a deep breath, take things as they come, and when the hard parts arrive, which they will, reach out for help if you need. Someone will be here, and hopefully there as well. Keep on keepin' on, DPM

      1. Hi . I just want to follow up and say I hope the articles/information I provided is helpful, but the lessons from 's lifetime of experience can't be beat. My wife, Kelly Mack (also a contributor here), like Daniel, was diagnosed as a child (they also happen to be good friends). I've seen first hand what he says about self care. Know that people here get it. Best, Richard ( Team)

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