should I worry, I am worried but should I

[stiff19]

Before my question BEST WISHES FOR THE NEW YEAR TO ALL 🕊

Amongst many symptoms ,varied and up and down and still no appointment with neurologist after years or Bristol Hospital referral I plod on. My ankles are causing much pain and occasional swelling, my toes no long bend my fingers no longer spread apart and my dropped eye now often gives a lot of pain along and above the brow.My bowels are not working properly and the night sweats are awful, I guess I could be menopausal or post menopausal 🤷‍♀️ but I seem to have no temperature control and at night just so hot I sleep with no covers now and its a very cool/cold room. I wake up stiff but eases some when moving but have to rest frequently and then im like an old woman to get going, stiff and hunched. Because of intermittent breathing problems where I just get a bit breathless like walking upstairs etc and sweats ad chest pains I got an Apple Watch given to me. It helps me with respiratory as when im feeling breathless it shows blood oxygen lower so I know its not in my head and at times of stress I see the heart rate risen.I was busy day before last and as usual yesterday I felt awful, fatigued and pains . I felt fatigued stiff burning in arms and legs sudden momentary pains in arms and hands and tummy ache, jaw ache and very bad pain above dropped eye . Sat watching tv last night and felt rough with heart palpitations but not the first time so thought nothing of it then got a notification on watch about high heart rate at 7.15 followed by 6 more up to 9 o'clock. The warnings did stop when the palms stopped. I don't wear the watch that much and did have a warning the other week but didnt think much of it but feeling rough and the palpitations last night along with warnings was worrisome.

My personal experience with healthcare led me to say I will have to be an emergency before any one takes notice but I don't want that to be the case. My daughter said I looked bad and go to a and e but given how it is now and with my experiences I decided not to but its left me anxious especially so with no diagnosis to date and ive kept away from uninterested gp but this has become my new normal and normal it is not.I am enduring life not living it.

Does anyone use a watch, are they reliable and should I be worried, well im worried for how I feel anyway but about the notifications? The notifications said I was being notified as inactive (watching tv) and heart rate risen above 100 .(which normally only happens when exercising)To be honest looking at data my heart rate is all over the place but different to last years data.

[PMRpro]

If you are having arrhythmias you do need to speak to your doctor asap. Under normal circumstances I would say call 999 when it is happening and they will turn up with a 12-lead ECG device and get the proof of what is going on. As it is - I think you are better off with the watch!

We have just had a discussion about using watches over on PMRGCAuk. These days they are pretty good and even if they are not as accurate as a medical device, they are not so off the wall that they will be ignored and some are better than others - some hospitals are using fitbit type devices as a screening to identify the patients who need closer study with the very much more expensive closed loop recorders. A single ECG booked at the GP is useless - they are only any use if it happens while you are hooked up and that often doesn't happen!

No idea how an Apple watch works - do you have to download the data or can you recall it on the device? Whichever - take it to the GP and be clear you need an early f2f discussion. It may be just ectopic beats and they turn out to be innocuous. But it needs to be assessed properly. Make a list of your symptoms - a diary of what you are doing at the times of the palpitations is useful and usually you are asked to keep notes when you have a monitor on.

If the occasional episodes of tachycardia are short, not severe and don't stop you doing things, it will depend on the type as to what they decide to do. My husband had almost permanent atrial fibrillation - he was on anticoagulant therapy anyway for another problem. I have paroxysmal a/fib, I have both an anticoagulant and an antiarrhythmic medication. I have a pacemaker as I was having occasional severe bradycardic episodes (slow heart rate) after the tachycardias.

You have all the signs of an autoimmune disorder - I know it tends to take a long time to sort out a/i disorders but you need to have a bit of a paddy! He who shouts loudest and all that! I don't think a neuro is the answer but a competent and curious rheumy. Can you afford a single private appointment to get the ball rolling?

[stiff19 in reply to PMRpro]

Thankyou for reply, I agree a single ecg is useless, I have that on watch I think I should have done one last night with notifications but did one this morning and ok. I can’t see neuro helping either, and I may be able to afford a single private appointment some time soon 🤞 but it’s who and where. I’ve kept away from docs since disinterest but at my cost and I’ve done the wait be patient and when I’m pushy they ask if I’m depressed 😡. Yes you’re right, I’ve been told by certain medics I need to find a doc with interest ( competent is a given but from experience lacking) but locally I don’t know such a thing exists. Even ent specialist said he didn’t think I’d get the help here and why it would be a good thing to be seen at Bristol which dermy referred to but way back and nothing yet.

Re the watch it holds the data on my phone so I can see all data since having watch. I will wear more often now I think. I know the nurses on rounds in hospital use the iPhones so 🤷‍♀️. I also had a few visits to a and e a couple of years ago after ambulance call outs said it weren’t settling but it did when there and said ask gp for 24 hr monitor but she did ecg and ok so never monitored. And as I now know a single ecg is no help if not happening at that point.

I guess I will make appointment at gp just to see what they say, I can’t stand my daughter keep texting and checking on me 😍

[PMRpro in reply to stiff19]

Where are you in the UK?

However - as far as the cardiac stuff is concerned - get the GP onside. Be firm, take your daughter with you and do a sit-in if necessary. The NHS is in a mess but when it comes to the real emergency stuff, they are still there.

[stiff19 in reply to PMRpro]

Dorset. yes I will make an appointment.

[PMRpro in reply to stiff19]

In terms of a recommended rheumy who thinks I would make the journey to Rod Hughes at Chertsey - he does private and NHS work. He listens to his patients and THINKS even when they don't necessarily have something of his own specialist interests. And when you are looking for a clue and diagnosis at the start that is what you need - it is what GPs are supposed to do but recently they seem to be scoring resounding "fails"

[stiff19 in reply to PMRpro]

Thankyou I will look into him and an appointment. Yes unfortunately it is not so recently either, equally there are the specialists as my rheumy who do not see a clear answer so fob you off and cause carnage, equally scoring the fails.The system has been broken for a long time at great cost to many including the ones in profession for right reason as well as patients. It boils down to luck, and Im just not lucky, most certainly not to be in need of a decent specialistin first place. I just wonder if as it would be okay an initial appointment if its worth it regards then relying on nhs after as it is, a decision I have to make I know but once trust is lost it can seem futile. Thanks for the name and response

[PMRpro in reply to stiff19]

Rod will often add patients to his NHS list when it is appropriate and they are willing to go to him. We like him because he is very good at PMR and that is something that is ignored/misdiagnosed/messed up a lot. Sometimes it's as if they think it isn't their field!! And then the patient needs someone to listen and sort out the mixed signals.

You are quite right - once trust is gone, there is no point at all carrying on.

This is a bit about him

topdoctors.co.uk/doctor/rod...

but DON'T use it to try to make an appointment as it seemed to disappear into the ether when someone tried to use it recently.

finder.bupa.co.uk/consultan...

has the right phone number for Jody his secretary but I don't think the email is right! Give her a call and ask for advice.

There may be someone better for you at Bath but it is knowing who to head for - and getting referred there by the sounds of things.

[stiff19 in reply to PMRpro]

either way it’s very helpful Thankyou

[dg70]

If you are in Bristol there is BIRD at Bath Hospital. Bath Institute for Rheumatic Diseases. This is a Lupus centre of excellence and has a multi disciplinary team to cover many issues. I am still awaiting an NHS appointment several months on, but I believe some of the Rheumatologists there take private appointments at BMI Bath Clinic. I have been to Bath BMI for eyes and kidney and they have been very good. I think nhs referrals can take from six months to a year at the moment but private can be just a few months or less. It gets the ball rolling as has been said. I pay privately for a Sjogrens specialist at Swindon DGH which costs me £150 for about 3/4 hour. Bloods and any tests are referred back to GP as its free and then the Rheumatologist looks at results and emails me if any issues. If I have any problems throughout the year I can email her secretary and she answers within a day or two. I am waiting for NHS at Bath because I have like you multi issues with Lupus as well now and need a team (kidney, eyes, heart, skin, lungs) rather than just a Rheumatologist alone, this would all cost a fortune if I stay private. I will keep my yearly with the Swindon specialist as I don't know yet what the nhs care will be like. BIRD does podcasts which are very good concerning Rheumatic problems. The thing is get your bloods done, describe your symptoms with a Rheumatologist and get a diagnosis. I did all this privately and am so glad as I got a diagnosis and piece of mind that it wasn't in my head and started on medication which really helps. If you have fatigue every day then that seems to be the biggest indicator of an autoimmune disease. For me menopause turbo boosted all my symptoms. GPs for me have been hopeless. I've been was sent all over the place in 10 years of searching for an answer but finally I got to the right speciality myself with no help and got diagnosed. Hoorah. I hope your journey is not so long.

[MrsMarigold in reply to dg70]

I’m so sorry dg70. We are very much alike. I’m sure my lupus was present for over 30 years. Incredible how we then blame ourselves and think we are hypochondriacs. And looney but we have prevailed. I have lupus and possibly sjogrens as well. Even here in the US depending where you live geographically, health care is lagging. Lupus itself is still a mysterious illness. Six hours ago I had a pale face. Now the malar rash is embedded into my face. Now a flare is imminent. What did I do? I cleaned out my closet, washed dishes, menial tasks. Maybe it’s an accumulation of a week? Many times I do not have a clue. Best to you.

[dg70 in reply to MrsMarigold]

Yep you never know what to expect next. Just rest after such exertion but cleaning out cupboards should not cause you to flare up but it does. I hate the itchy burning rashes. My neck has it at the moment and the steroid cream is not touching it yet. I hope the US has good care out there for you. I have a friend in South Carolina and know her care is not so great. Take care

[stiff19 in reply to dg70]

The best thing about reading your reply was that after 10 years you finally got your diagnosis, hoorah to that, but sorry it took ten years. Thankyou, im not in Bristol but just had a referral there which has never come about yet .I too hope my journey is not so long and thank you for response 🙏

[dg70 in reply to stiff19]

Just keep going and hopefully you'll get a diagnosis. It's the suffering inbetween that's such a pain.

[stiff19 in reply to dg70]

It most definitely is , I hope you get your nhs at Bath soon .

[Christineosh]

am going to go about this a different way. Go to your doc and have your hormonal levels checked. If you have any thought you are going through the menopause let me tell you from myself and three daughters, symptoms can be hell.

Palpations , sweating, panic attacks, headaches, depression are just a few of the symptoms. Try, it maybe HRT will be your savour. Forget the Watch

[stiff19 in reply to Christineosh]

Thankyou

[PositiveT]

Morning. I hope you had a better nights sleep?I have just read your post.

1) my rheumatologist consultant advised me to buy a fitbit and wear it every day. So perhaps that helps you with your question about watch wear?

2) Please ask (don't wait to be offered) for a full blood count blood test. Any heart issues can be picked up from that. I have bloods done fortnightly to monthly and in the past the on call duty doctor has requested an ambulance for me when they have spotted something. In February last year I was having a mild heart attack and didn't know. If it wasn't for my on call GP checking my bloods I wouldn't have known. Not trying to scare you but it is even more important now that the NHS are under pressure that we are proactive in raising awareness of our situations. Any emergencies are always dealt with.

I feel very upset for you as you are struggling and not getting the help you need. Your daughter is right; go to the Doctors and get a rheumatology appointment. As Mum's it is very easy to shrug it off and plod on but we also have to look after ourselves for the rest of our family worry.

Sending you a big hug and I hope you get some help soon.

🌻

[stiff19 in reply to PositiveT]

thankyou , yes I spoke to someone earlier by chance meeting who has her watch checked by docs regularly for readings re heart so I guess they are helpful. Sorry to hear of your heart attack thank goodness your gp .🙏 and thankyou for the welcomed hug

Best wishes 🕊

[Spotty-ewe]

Some excellent advice here Stiff. Please oh please speak to a GP or go to A&E like your daughter suggested. A friend went to A&E last week with an on-going problem with her ankle and was given x-ray straight away, crutches and a boot to wear and MRI booked for this week. So they are still working well for us. Your problem is more life-threatening, so please don’t ignore it. Big hugs. 🤗xx

[stiff19 in reply to Spotty-ewe]

Thankyou spotty🙏 I have made appointment with gp .Pleased to hear the nhs is working for someoene, but if there's someone getting help to its better than no one 👍love and best wishes 😘🤗x

[Spotty-ewe in reply to stiff19]

I’m relieved to hear that Stiff. Let us know how it goes. 🤞🙏🏻🍀xxx

[stiff19 in reply to Spotty-ewe]

will do. 🤗xx