So fed up

[Bubble89]

Earlier this year my GP sent referrals off for me to see Rhumatology and Cardiology. About a month ago I got all my cardiology appointments which are in a few weeks, and a letter from Rhumatology saying I'd been added to the waiting list and would be sent an appointment in due course.

My health has been poor for years now, but really seems to have deteriorated in the last year. Just before Christmas I caught a bug and I don't feel like I ever really recovered from it. Things have been sliding since then. I have been managing, but have got to the point where all's I do is work. I have to be able to keep working (££), so everything else has had to go on the back burner. My house is a bomb site. I'm not doing anything socially. I just work and sleep. I'm lucky that I have a really supportive partner, and absolutely love my job. I get on really well with my colleagues too, so work is kind of my social experience at the moment too.

I woke up for work on Monday and had a complete melt down because I couldn't see how I could go to work and do another 5 days. I've reached an all time low of how crappy I feel. I'm exhausted. I've had to buy eye drops because it feels like I'm blinking grit. My hands and wrists and ankles feel like constant toothache. I can't think, my brain isn't working. I admitted defeat and took the day off sick. Then the next day. I'm sleeping 10-11 hours at a time and waking up exhausted. I thought I felt a bit better at one point yesterday so tried to do some house work, but after 10 minutes I was exhausted and drenched in sweat. I've got a temperature. Yesterday was my 3rd sick day (you can only self certify for 3 days here) so I booked a doctor's appointment (couldn't see my usual gp as he had no appointments). She wanted to sign me off longer term but I dug my heels in because work is so important for me, and she agreed to sign me off until Monday and we will review it then. She was surprised I hadn't had an appointment for Rhumatology yet so advised me to ring the clinic, which I did, and they've rung me back this morning.

Apparently the consultant has graded my referral as 'routine' which means I'm at the bottom of the list. The clinic coordinator said she was very surprised it had been graded as this having looked at my referral letter, but that there was nothing she could do. It means I'm going to be waiting another 6-8 months for an appointment.

I've sat in bed and cried for the past hour. I'm too tired to keep battling doctor's. The idea of having to live like this for another 8 months feels impossible. I feel completely defeated. The clinic coordinator has asked me to get my GP to send a follow up letter explaining that I've been signed off work, and she will ask the consultant to look at it again, so I'm trying to psych myself up to ring the surgery now. I'm just so tired of feeling like I need to prove how ill I feel. It feels like my desperation to keep working (with the support of my amazing employer who has made a lot of adjustments to make this possible) has been interpreted as this some how not having an impact on my life. But it feels like it has taken everything away from me apart from my job, and if I loose that too I don't know what I'll do.

Sorry for the long post. I really needed to vent. I feel so awful for my partner because I don't want to constantly be dumping this on him all the time. But I have so few other people to talk to because my life has become very small whilst being unwell.

Thanks in advance for listening x

[KayHimm]

I feel awful for you. It is heartbreaking that you would have to wait this long to see a specialist. Just a guess but « routine » may be decided on based on possible organ involvement. They are clearly so stretched in the UK right now. But you should definitely take the clinic coordinator’s suggestion. She may know that inability to perform work for a given number of weeks puts you higher on the list. Hoping the best. K

[Bubble89 in reply to KayHimm]

Hey KayHimm, thanks for the reply. I wondered this too. I'm confused about what the doctor's thoughts are currently about organ involvement. I have an absolute mass of symptoms, but at my worst I experience severe upper right abdominal pain, tachycardia and palpitations. I've had 2 ultrasounds historically for the abdominal pain which seem to have show enlargement in my liver but it's never been explained. The heart symptoms happen at the same time and that's what my cardiology referral is for, I'm having a scan and a 72 hour monitor fitted. If nothing else I'm reassured about that. The stomach pains and heart symptoms have always terrified me but until I started seeing this new GP they've never been taken seriously. Last year, when I had a bad episode of the pain and heart stuff, my old gp rushed me to hospital because he thought I had a blood clot. Once the blood clot was ruled out nothing further was done, hence the change to seeing someone new. The new doctor has found hypothyroidism with anti thyroid anti bodies, lupus anticoagulant, and 2 positive 'lupus test' - if you've seen my other posts I still have no idea what these tests actually are! But I get the impression with his referrals, he definitely feels something is going on and is concerned about my heart symptoms. I've had blood panels which haven't shown anything hugely unusual with my liver or kidneys as far as I know. I've never had a urine test, but dont know how important that is if the bloods are okay.

I spoke to my doctor's secretary and he's going to write another letter today reiterating his concerns and how things are deteriorating. The doctor I saw yesterday spoke to me about steroids, but I'm reluctant to pursue that until I've seen a specialist. At the same time if it's going to be that long, I don't know if I can wait. Just a bit lost today really. I feel a bit better now for having got it off my chest though, so thank you.

X

[KayHimm in reply to Bubble89]

My guess is it would be it is “routine” within that particular specialty. On the other hand, your heart issues need to be evaluated urgently by the cardiologist. If your doctor is talking about putting you on steroids, he must be thinking you have something inflammatory. Since the referral system is so poor right now, he may think it best to start you on medication. You are feeling pretty awful. I would certainly consider going on the steroids. The cardiologist’s input will be important too. If you feel a lot better on the steroids, that is also diagnostic.

[KayHimm in reply to Bubble89]

I looked back at your posts. Your GP must think there is enough evidence to suggest autoimmune disease. If I am getting it correctly, you have anti-phospholipid antibodies, likely positive ANA and anti-thyroid antibodies. They are doing tests to see what is going on concerning your symptoms — so looking for possible organ involvement. I think your GP is perfectly capable of starting the steroids before you see the rheumatologist. He can always pick up the phone and talk to the rheumatologist too. I think he is being thorough and a good advocate for you. I would take the steroids. Others may think it better to wait. You will have to do what you are comfortable with. K

[Bubble89 in reply to KayHimm]

I'm really pleased I found this new GP. I've made more progress with him than I had in nearly 8 years with my last doctor! He really is brilliant and I trust him. I think I'm nervous of steroids because I've heard horror stories about some of the sudeveffectsm that being said, the potential benefits are starting to out weigh my worries.

I think I'm going to make an appointment for Monday to see my doctor. I can get my sick note extended if I need it and talk about medication in the meantime. I've got a load of new photos to show him too, various rashes and red face and white toes. The surgery rang me back this afternoon to say he is writing me a follow up letter to the Rhumatology team so it sounds like we've done everything we can from our side of it now. It's just so frustrating! Enough is enough. My upset turned to a simmering rage sometime around lunch time! Hahaha

Thank goodness for this forum! Definitely playing a big part in me keeping my sanity at the moment.

[KayHimm in reply to Bubble89]

Sounds very frustrating! Yes, the benefits of the steroids have to be weighed out. Sounds like your doctor has already decided you need them to get you functioning. The rheumatologist would likely have to weigh risks in the same way. I think your doctor is pretty sure he would start with steroids initially. That is not uncommon. Great you have tried to move your appointment up and to get in to discuss options with GP, who sounds excellent. Good luck and keep us posted.

[KeepingUpBeat]

Hi Bubble89 You sound exactly like me last year, I feel you pain, frustration and sheer exhaustion. Has your GP order any bloods as this was how I had my referral prioritised and waiting time reduced. I was actually telephoned by the Rheumatology Clinic with an urgent appointment. The blood results can be shared in the follow-up GP letter emphasising how the symptoms are impact on your daily functioning which is decreasing. Just a thought. Hang on in there.

[Bubble89 in reply to KeepingUpBeat]

Hey keepingupbeat, thanks for replying. The GP has done a number of bloods over the past 8 months leading up to him referring me. These showed positive lupus anticoagulant, and 2 positive 'lupus test'. I'm still not clear on what these are as you might have seen in my prior posts. I thought they may be ANA tests, but it literally says 'lupus test' on the results sheet, and the result isn't written as a titre. Whatever it is, it's different to the anticoagulant. I'm seeing GP again in the morning, expecting to be signed off for another week, so will see if he wants to do any more bloods. Hoping to talk to him about a follow up letter to Rhumatology, and possibly some medication to help in the interim. I'm starting to feel a little better now thank goodness. Hopefully it's starting to ease up!