Sticky Blood-Hughes Syndrome Support
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Can not shake off sore throat

Why can I not shake off a sore throat and yet another ear infection, I am slowly feeling like im going mad. Standing up and sitting down is still painful. I feel on the brink of giving up my job because I can not do it anymore, because the pain is so bad. The NHS are proving they are not up to treating so had to change hospitals. The new hospital found a leakage from the lumbar area, the chap said no wonder im in pain.

15 Replies

Hi Karen,

When we have an auto immune disorder it can play around with how we react to infections.

So it's most probably to do with our low immunity, unfortunely you may need some antibiotics to kick it away.

I find I have a cold longer, kidney & bladder infections too.

You need to get it sorted out as soon as possible before it could get worse.

Sue x


Hi Sue

Thank you for the reply. Immune system yes its been battered, someone came in with sickness bug at work knowing full well I had just come of hospital, I caught the sickness and ended back in hospital was not a happy bunny. In ten months I have had two ear infections, a throat infection and more than two TIAs. My memory has gone I have lost most of last year. I sometimes feel like I am defeated the hospital seems to skirt around isdues and not solve the problems. I august I had a weekend in hospital as the pain in my head got so bad, the A&E doctor wanted me to see a stroke doctor but I never got to see one as I was moved to a ward and ignored for the weekend.


Are you on Plaquenil?? I had a sore throat the other day and the doctor sent me for a full blood count as she said sometimes it can be caused by Plaquenil. Just thought I'd mention just in case it's relevant to you. My sore throat has gone and didn't hear anything back from the doctors so I'm assuming all was ok for me.

Hope you get rid of it soon.



Wow I have never heard that about Plaquenil. I suppose it lowers your immune system.



Just to be the opposite, my sore throats have cleared up a lot since being on plaquenil. I dont think it affects your immune system or we would all be on our knees!!


Hope you feel better soon, infections have to be nipped in the bud as the immune system will over react to them badly. I notice that if I have some sort of infection not treated due to not being that obvious in the first place, things get very tricky. Once they have knocked the infection back you should pick up a fair amount xx Mary F x


"The new hospital found a leakage in the lumbar area?!" How did they find that out? Were you having a spinal tap? What did they do about it? I would be much more concerned about that than any other problem you mentioned.

About your tonsils. If the infection has lasted longer than 4 weeks with a refill antibiotic to rid the infection I would worry if my GP isn't. A very dear friend of mine has a husband who had the exact same problem. At 44 years old they decided to take his tonsils out and found a very complicated cancer entwined not only around his tonsils but lymphs and more. This little sore throat then metastasized into bladder cancer which he lost. He is now under his second round of chemo and will go through more radiation when it is complete , if he lives through that.

I really don't mean to scare you. This is a true story. It was just a sore throat last year that he couldn't quite shake. Get on those doctors! Get the sore throat answered first and then the leakage in lumbar fluid. It doesn't sound to me like you received complete nor adequate care. I'd be seeing superiors and asking for second opinions. Firmly. Don't be so pleased with your new hospital yet. You haven't received any answers. Why won't the sore throat infection be stopped and why do you have leakage of spinal fluid and what do they intend to do about it and how soon? What will the consequences of waiting do to your overall condition? Compound it? I get a bad feeling about this Karen. Are you at a teaching University Hospital? There are so many in Portland. I pray you get some concrete answers, an understanding and plan of action soon.

Warm wishes and I hope you feel better soon.



Was talking to a customer at work turned out to be a doctor at a hospital I was not being seen by as its out my area, was telling him about why I walk with a crutch, and the pain im in when im standing or sitting, he said he knew what was up, I had a MRI 3weeks later after meeting him at the hospital he works at and he was right I was sat up and discharged from the other hospital to quickly with no follow up, been advised to drink caffine and am waiting for a blood patch. I was asked not to take my blood thinners for a week to check my blood stickiness. I have comfirmed APS. He is having a closer look at my brain MRIs and measuring the size of the white spots in my brain he thinks I have had more than two TIAs before blood thinners. Sold him and his wife garden chairs and table hes sorting my health out good return I would say.


I am pleased for you that some help has come your way so sort the problem out, he sounds like somebody who will not stop until the puzzle is solved, which of course is just what you need. Mary F x


Mary can not stand being ill and tired I want answers to why my medical care has been so messed up.


I totally understand how you feel, many of us have had the same diabolical care and treatment, myself included, also my children, all being sorted now, to be so unwell and not have the answers, and also feel messed around is never good. I hope this can progress for you in the right direction. Mary F x


I think the NHS needs to grow up and sort themselves out. We have allbbattled the NHS to get an answer why should we? Sitting in pain is no fun, being toldcyou only have a headache or migraine, but the Migraine trust has never heard of a migraine lasting everyday for nearly a day.

I am now going to have all my MRIs and CTs looked at how they should be.

Think all people should be treated with respect and listened to more. The research has come on leaps and bounds but doctors lag behind.

in August a doctor asked me how much I had drank before I was admitted, looked shocked they reply I have not drank any alcohol because of my meds, I have not drank alcohol since last year, they doctor called me a liar :( shame on the doctor I was in pain and he was saying stuff that was not true.


Truly awful... my son had a migraine which lasted 15 months and 4 days, black outs, dead legs and vomiting, also my daughter similar... plus myself... similar long headaches... I too was told it was all imagined until I got out of my area. There at times is some real disrespect out there... and this is contrasted with some good care which I now have - having been through the system and mangled thoroughly. I have used any residual anger to do something useful, ie working on here in a volunteering capacity - most days of the week. Sorry about your terrible doctor I hope you were able to bring this up in your area! Mary F x


That is truly shocking and reminds me of another story I read recently about somebody who was treated badly at an American Hospital who again they thought had been drinking but actually was having a stroke! There is really no excuse for the behaviour of some Doctors and my feeling is that the only way they will learn is if you take the time to write them a letter explaining how they made you feel and what they did wrong or they will continue to do it again and again to other patients too. And make sure you copy it into the Hospital PALS department too.

Im so sorry you endured that. If you go back to your GP you can ask to be referred to a Headache Specialist who can treat Migraine as an individual condition especially if the pain becomes intractable and the medications and anticoagulation are not having any appreciable affect. No one should be just left to put up with such a depilating condition.


I don't have a migraine, I have a brain fluid leakage, I am only in pain when I sit for a long time or standing, I am on strong pain killers, and have blood patches put in in three weeks. I have four large white spots on my brain and about six small white scarring from small strokes. :( I still work but dont get sick pay anymore as I am off more than im there. I pick up any bug that is going round, in work a person came in with a sickness bug I ended up in hospital as my immune system gave up fighting :( after catching it.


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