long covid

[DavidCB]

My fibro had a flare that got a lot worse and stayed after I had covid in Dec 2021, and I now think this is a comorbidity esp as the symptoms overlap with fibro, but for me the severity and longevity has become so much worse since I had covid in a way my fibro never was before, the GP wanted to put everything down to fibro, but they have referred me now to the long covid team (but only after I pushed for it).

I was listening to a BBC podcast on the world service 'The documentary podcast: the long haul of long covid' :

bbc.co.uk/sounds/play/p0f73...

It also includes up-to-date trials etc including the Stimulate trial (UK) which I found interesting as I have been invited to do this study locally (in the last week) and I'm looking forward to seeing what my torso MRI shows (hopefully it will as I have a bit of imposter syndrome at times esp as many people shrug this off as 'just a cold'), and see if I'm invited onto the drug trial.

Anyway, I thought this may be interesting to others and thought to share.

[Yassytina FMA UK Volunteer]

Thankyou for your post , I am sure members will read with interest , I caught Covid 1st time last July , although I have CFS as well I am constantly catching every germ that enters the house and not had the best of starts this year , I do feel for me personally that Covid has impacted my immune system even more now. Glad you pushed and got a referral. Let us know how it works out Take care .

[Judithdalston]

I am always interested in hearing of those who have LC ontop of fibromyalgia as so many of the symptoms are similar, and consequently we are ignored! I seem to have had covid 3 times, last tested positive about 20 months ago, and each time my fibromyalgia has got worse. So had LC for nearly 3 years so as well as un-releaving 24/7 all over pain/fatigue, and greater brain fog I also got raised BP ( now inadequately treated with 5 BP drugs), in last year plus noticeable raised HR ( 100 plus on standing or slightest task like hair brushing). One of my Gps admitted she was ‘not interested in LC’, and it has taken a huge effort over 2.5 years to get my Gps to take any notice of my problems. I am now on 5 different BP drugs which still aren’t working, had two chest X-rays, 1 echocardiogram and 2 ecgs, a 5 week LC Breathing Clinic( useless), and last 3 months resorted to DIY nattokinase. I presume the radio programme you heard linked to work by Prof.Danny Altmann ( handbook with Gez Medinger)in Uk, and South Africans like Pretoria’, so you’ll know about anti blood clotters. I am supposed to be joining a trial at Hallamshire Uni looking at ‘alternatives’ too, but what is the drug trial you are joining? Sounds like real medicine which is welll beyond anything I can get!

[DavidCB in reply to Judithdalston]

I’ve had the MRI (took 50mins) which scanned the heart, lungs, kidneys, liver and get results in a few weeks. Some people they only look at their data (dr results and note etc)

If they progress me to the drug trial it’s either :

Famotidine 40 mg tablet once a day + Loratadine 10 mg tablet once a day + Usual Care

OR

2. Colchicine 500 mcg tablet twice daily + Usual Care

OR

3. Rivaroxaban 10mg tablet once daily + Usual Care

OR

4. Usual Care (No drug)

I have to wait and see on that, I’ve more info on the above of anyone want it.

[Judithdalston in reply to DavidCB]

interesting, and quite rightly trialling lots of different ‘meds’ at once. I tried two over counter antihistamines for about 2-3 months each when it was suggested they might help, but didn’t notice any difference, but suspect the trial is both higher dose and mixing drugs. I’d fancy 3. the clot buster if I got a choice! At least you got the MRI scan done too that will help with your recovery. Not sure if a heard that particular radio program, though I do listen to a lot of World Service, so will listen later, thanks.

[LisaSnow FMA UK Volunteer]

Viral infection is a huge stress on your body (fighting the viruses off and repairing the damages were a lot of work) so that is not unexpected. Every time I have a common cold or minor injury, my wide spread pain and fatigue double in intensity. Give yourself extra rest and care when encountering stressful situations can help.

[DavidCB]

Just an update on my mri results / long covid study etc -

I’ve had a slight issue with fat around liver and pancreas but a very minor amount but otherwise appears fine , low vit D levels so recommend need to take some supplements (I already take a multivitamin with 10ug in it but was told it not enough, even it’s the Recommended daily requirement, so orders some 4,000 ug to see if it helps).

They want to do some extra minor test about heart rate and oxygen levels laying / standing / doing some exercise as it shoots up which I’m told is a how some / a sub group of long covid react but generally not the norm.

They noted they think i have got long covid and not just fibromyalgia which I also have and is a comorbidity, I had to push my GP on this before.

On the covid study I was randomized into the control group so no drugs just monitor and journal over the 1-2 yrs of the study, healthy eating classes and breathing exercises etc (not expecting that to help), plus the extra tests above.

Will see what happens

[DavidCB]

thought I would give an update as I’ve met with the trial people today 1.5hr meeting and reviewing plus a loooong questionnaire , turns out I was randomised to one of the drug trials (2) colchicine , only started it today so will see, plus the usual long covid care and an app to monitor stuff too. See what happens.