Four days - Four appointments

Does anyone else literally end up being in hospital every damned day of the week?

Tuesday I had to see the cardiologist, Wednesday I had to see a doctor about my allergic reaction last week. Today I had to have blood work done and then I have hepatology tomorrow. I have a load more referrals as well to sleep clinic etc and am just fed up with seeing hospitals.

I am almost exhausted to the point of just curling up and refusing to move. Then there was the disaster with the buses today. Firstly I asked the driver if the bus went to Rugby and was told it did, sat on it and then we went the other way so he had lied. Then when I got back to the hospital (it is a circular route thankfully) I waited for the next one and the woman driving it just waved as she drove past my stop. I got home two hours later in tears wishing that I could be normal or just not exist :'(.

Sorry for ranting... I am just so fed up

Dear Mike,

Just one a week is exhuasting enough without one every day! I do know it is important for you to go to all the different places seperately, but you would think you could at least have all your blood work done in one day! So far we are lucky here and can go when we wish, that could very well change.

Please try your best to recharge after each visit, surely the bus situation just increased your exhaustion. My heart is with you, hope you feel better and that all is well with all the Dr visits and tests.

Thank you :-) They were checking my Renin today and Aldosterone so I needed to go to the bigger hospital for it. I have to see a sleep specialist, have ECGs, do a 24 hour urine test, have bloods and have my heart ultrasounded. I have been given more pills in case of latex (12 steroid pills and then 12 more an hour later and then 3-6 Piriton pils every day for a week after, and steroid cream for the rash). So tired from it all :-( xx

Awwwwww, Mike, I'm sorry!!!! Those days are so rough, aren't they? Especially when you DON'T FEEL WELL and everything goes wrong.

And it's so hard to get up the energy to go out, let alone go to the doctor. Even worse when you don't have transportation and have to take a bus. In the summer.

I hope you're more comfortable now, Mike. Sit back, find a good show on tv.

You DO have a lot of doctor appts. Do you have more than fibro going on? I think I'd be beyond exhausted visiting all of those doctors, esp. w/o a car. I hope you have a better time of it next time.

ANOTHER person with a sleep disorder. See? I think that study has validity. I think sleep might be the key to our illnesses.

Fibro is the main problem in my opinion but I have stupidly high blood pressure (has been 220/200) which is resisting all attempts to sort it so I see cardiology for that. Then I see haematology for my spleen which is enlarged (without a real reason) and my blood because I have 10X more red cells that I should but only one in thirty is big enough to carry oxygen. I have to see hepatology because my liver is swollen (again without cause) and I hate elevated liver enzyme levels in my blood.

Aside from that I just have scans, normal doctors appointments, blood taking and physio etc to cope with.

I also have hypermobility and my joints lock for no reason so I have been advised to not drive in case they lock on a pedal and I have an accident :( Mikex

In order to have a restful sleep we need to enter the REM (dream) phase of sleep. Most people with fibro wake up every 10-15 minutes and reposition (although we do not know it but ask a partner or set up a camera and you will see). This means we do not get the REM sleep and we do not rest properly. This is not just psychological but affects the muscles and body tissues (tendons, nerves etc). Hope I have not made that too difficult to understand xx

I am on the verge of giving up. I know that I have to if I want to get better but at the same time am fed up of it. I am also looking after my dad's house and taking the dogs out on my own this week because he is away so kind of double pressure :( xx

Well I wish I could help. Move to Houston and Iā€™ll give you a lift. :wink:

Lol I would love to move to the US one day, but for now I am stuck over here :'( *plays "rescue me" on the computer* xx

Nope, not in the least, Mike! Interesting stuff. And I posted a thread about how sleep apnea has now been linked to some auto-immune diseases. I wonder if it's also linked to fibro?

Sorry for the off-topic here. Just think it's a thought worth pursuing.

Geez oh wheez, Mike, no WONDER you're tired of seeing doctors! With that list of medical conditions you must have to go every week.

Yeah, your blood pressure is "stupidly" high. Does the doctor have any idea WHY that is? And why you have 10 times more red blood cells but they're not carrying enough oxygen? Or why your liver is swollen or the spleen is enlarged? I mean, these are odd occurrences. A LOT of odd occurrences.

Do you have a friend or family member who could help you with the house Or the dogs? Big dogs that need lots of walking, I presume? Because with your illnesses, you don't seem like the optimal candidate for all of that extra work and stress.

UK? Don't worry, our health care is heading in your direction (plays "Dragnet" theme on computer.)

Think of it as taking a break from the doctors. When you're ready, you'll go back.

My partner is working in Norway and my dad's house is a mile or so from my flat so I am staying at his house with them. There are people round here to help but I feel guilty asking them. My brother is on holiday as well or he would be helping. The dogs are lovely in fairness. They know that I do not feel up to going far and accept it. If I was just being lazy they would annoy me until I went further like they do with my brother lol xx

In fairness to our healthcare most of my referrals are made within a week and everything over here is free for me, from the appointment to the medication and all the scans and blood tests etc. I cannot honestly complain about our healthcare, but the climate is a pain in the arse xx

Their best guess is portal hypertension for the liver and spleen and thus blood. As for the blood pressure they have only just started seeing me at the hospital for it so no idea but the professor I have seen has ordered a shed load of tests to find out. He does believe it is secondary hypertension (a symptom of something else, not an event in itself) so in a way that is good because it means my lifestyle is not to blame :) xx

Okay. I just looked it up. It sounds like you need to get things resolved. I hope you can get that blood pressure down. My mother has the same problem and constantly struggles with getting it in line. I don't think that's the norm though. I wonder if the high blood pressure is related to the portal hypertension?

Siiiiiiiiiiiiigh, well ours won't be free.