New and getting desperate

[whisperit]

Hello, I badly need some thoughts about my increasing fatigue and weakness, which recently has increased to the point where I am effectively confined to the sofa all day, and becoming very anxious.

I am 57 and until last year, very active and working full time. But this year, I was diagnosed with mixed tissue auto-immune disorder. I have significant lung involvement and have been on hydroxychloroquine and prednisilone for several months. This seems to have helped with both the lung function and joint pain.

However, the main symptom is extreme fatigue and weakness and these have got alarmingly worse. My current situation is that I wake feeling nauseous and weak - I can hardly bear the thought of having to rise from bed. Getting dressed leaves me shaking with exhaustion, and I am too nauseous to eat more than a few mouthfuls of breakfast. I spend the entire day sitting on the sofa, and any exertion (eg to go to the loo) leaves me shaking and nauseous. As the day goes on, I find I get sweats and uncontrollable shivering, and recently palpitations too (my resting heart rate is now around 100!).

I have had several discussions with my rheumatology and respiratory consultants, who have suggested opportunistic infections as an explanation. But numerous tests for infections have turned up nothing. My GP sent me to A&E last week owing to the heart symptoms - no heart abnormalities were found.

Chronic Fatigue and/or PoTS? What tests/referrals should I be seeking? How best to get this taken seriously?

Thanks

[myhealthneeds]

Hello. I can see why you feel so worried about this. It is very confusing and upsetting. Where in the UK do you live? There are ME Clinics in some places, some good, some not too good but nothing in Wales. There are ME/CFS/Fibro support groups in various places too. You can get tests for POTS in Newcastle or London and maybe elsewhere?

Look forward to hearing more from you.

[whisperit in reply to myhealthneeds]

Thanks, myhealthneeds,

I live in Wales of course!!! Having spent yesterday with Dr Google, I am currently strongly inclined to think it may be POTS; this fits well with both the symptoms and my past medical history. I also had an echocardiogram yesterday so I plan to discuss POTS

as a possible diagnosis when we look at the report on Friday.

Hope I didn't sound too histrionic in my OP!

Thanks again,

mx

[myhealthneeds in reply to whisperit]

Oh no! But good in one way as I'm in Wales too...so we can work together on this maybe? I'm in the South near Cardiff and we have a Support Meeting next Monday (but most people can't get to meetings because of condition but we do visit, text, email, phone etc).

M

[whisperit in reply to myhealthneeds]

That's good news for me! I live in Abergavenny, and although I am essentially housebound atm, I'd welcome it if you could PM details of the support group if possible? Thanks, M

[myhealthneeds in reply to whisperit]

OK great! I was in your town two Sundays ago at the hospital visiting an ME woman from Torfaen. There is a Dr in Newport, Dr Llewelyn who is familiar with ME and has a number of patients. You are under the ABHB I presume? There is a Clinic in Bristol and one woman is Chepstow has been allowed to stay over the boarder to go to the Clinic. I'll send you a private message on here, if you can find it... M

[stillsick]

Hello! Just seen your post and wondering how you are feeling now. I am in a similar situation myself although my nightmare started with a flu jab followed by several antibiotics in Oct 15. I had previously been diagnosed with fibromyalgia. After the jab and drugs my body went totally out of control weak shaky racing heartbeat on standing and especially after eating I went to A&E 8 times but they kept sending me home. I had a body PET scan which showed a lung infection Haemophilus and head and spine MRIs numerous blood tests all ok. I lost 2 stone which I think was none of the food I was eating was being absorbed. I spent 3 months on the sofa too weak to do anything. Finally a doctor at the hospital put me on calcium channel blockers for my racing heart this seemed to help but I was still so weak I had to use a wheelchair. Then over summer I gradually started to be able to walk more less weak and shaky and almost back to normal. I attended a chronic fatigue clinic in August but I was ok at that point. Then in September I just started to go downhill again and now I'm back on the sofa weak and shaky cant walk far, sweating, feel sick, my tums bloated, eyesight blurred, feel foggy, weak and shaky pounding heart after eating, walking and going to the toilet. I think its POTS too. The NHS site for POTs says you can get this as a symptom of chronic fatigue. Its over a year now since the jab and I'm getting no help just blood tests all the time that show nothing. Had heart ultrasound last year all ok. I'm 59 we had just retired I had things I wanted to do!! Thinking of asking my doc if I can have a tilt table test but I don't think there's much to help other than rest and keep trying to walk a little each day without symptoms. I did come out of it before so I'm just trying to get through it again its not easy I think anxiety is all part of it too when it comes on I just do some breathing exercises which help abit. I did think of going private to get help but after reading posts online this is how it seems to be. I have found Dr Sarah Myhills website useful but I cant take any suppplements because I seem to have become allergic to meds and foods. Hope you find some answers and recovery and know you're not alone in this! Take care!

[whisperit in reply to stillsick]

Thanks stillsick,

It's kind of reassuring to hear that you have had a rather similar experience - even though I am sorry to hear you've had such a hard time.

Since I posted, I've had an emergency admission following worsening chest pain and was checked by the general medical team. One thing that turned up on echocardiogram was some indication of heart failure. Combined with the POTS type symptoms, I managed to get an "urgent" referral to cardiology from this. Hopefully, this will include some tilt tests, but if I am not seen by the specialist team within a few weeks, my GP says he will start me on ACE inhibitors and B blockers anyway.

At my recent rheumatology review, my rheumy said he doesn't really deal with this side of things, and since my bloods, lung and joint symptoms show improvement, he is adopting a "wait and see" attitude. I was not very impressed.

So while I wait for the cardiology appointment, I am continuing with my 'normal' meds, plus the kind of advice you mention from the POTS UK site. The main one is increasing how much water I drink to at least 2 litres a day (plus tea etc). I have also asked a private physio to visit me to advise on ways I can keep my circulation going, build up my "calf pump" etc. I have some ideas, but feel that some professional advice will help me adopt a systematic approach to this.

Keep in touch with how things are going!

[stillsick]

Hi thanks for replying sorry you've had more symptoms and been admitted but hope you will get the care you need. They kept telling me it was all anxiety for months it was so frustrating! My rheumatologist thought it was autonomic issues and I needed a tilt table test but nothing was done. Hope you see the cardiologist soon. Please rest as much as possible and take care of yourself!

[whisperit in reply to stillsick]

thanks - you too