I know a lot of people with ME seem to have sinusitis issues. However I get a symptom with my sinuses and that general area which I have had repeatedly for some years. It feels to be part of a new virus each time - general soreness in the nasal area, which then can become painful. I usually treat it with a neti pot with a couple of drops of Oil of Oregano, and also take some O of O orally as it's the only thing that seems to help with these attacks. Any other suggestions for treatment and support gratefully received - am guessing it's more an inflammation issue than a mucus one. I had some respite in 2016 and part of 2017, and I was doing pretty well with stamina, until I believed that the Endocrinologists scuppered me by disapproving of my T3 use, and getting me to add in T4. My health declined last year as a result, and even though I am now back on T3 only, I am am still struggling. I have got my GP to do immunoglobulin tests in the past and they show low IgA (below range) and low IgG (sometimes just in range and sometimes below). I am beginning to feel mentally low with it, and feel that I won't easily get back to the point I was at and I feel my life closing in on me. In fact, I have been able to be a member of a dance/theatre group on and off for over 10 years, (with breaks of a year or so when I had a particularly bad dip), but I am now afraid that I won't be able to participate again. People in the group have disabilities but they are not ME ones, but I do have adjustments so I can come in later as I can't dance or move for a couple of hours now. I am also one of the oldest ones now in the group which doesn't help! I have had a really difficult 18 months with 3 eye operations - 2 of them emergency ones (retinal detachment) and I feel that has added to my decline at a time when my thyroid medication was not optimal. Also I have very few supportive friends (and no relatives nearby), and a husband who helps practically but does not support emotionally. One of the few friends I have who lives very near me is about to move the other end of the country. Her husband was incredibly kind when I had one of my eye emergencies and took me to hospital and stayed with me for 12 hours (my husband hates/afraid of hospitals and does not drive). So I guess this is also part of the mix. Sorry this is a bit of a muddle of a post and I don't usually post about emotional stuff, but I guess I am trying to find my way through this and I am conscious that the physical stuff is weighing me down. I am hoping that I will pick up with the summer coming as I usually do and that will lift my spirits too.
Sorry you're struggling, @Agapanthus. So am I at present - no husband at all, one friend who doesn't really understand and has moved out of reach, but phones every week or two at present, and like many people, I've lost touch with so many. I can't even visit the GP easily, as had to move to a practice about 3 miles away. Just want to offer understanding. No need to reply. Hardly slept at all last night so am not functioning well at all.
Thank you for taking the time to write @MeSci even though I know you are in a worse position than I am. It is very difficult to be so isolated and with few friends. Can you get out at all - do you have to use taxis? I seem to remember that you do not have a car (as we do not either). I hope you sleep better tonight too....
Thank you @Liv aka Mrs Sowester Do you have mucus with it or just pain as I do? I wonder if mine is a kind of autoimmune reaction. I do see that the Sterimar is good for allergies so it could be helpful.
Yes, pain, no mucus. I get very sore and bleed a little in response to dust, cleaning sprays, soot, pollen, perfumes, traffic fumes etc. I'm fairly certain I have an inherited mast cell disorder. Sterimar is just a salt water spray, you squirt it up your nose then blow, it washes away the irritants effectively. I've found it better than the anti-histamine hayfever type sprays.
@Agapanthus So sorry to hear that both you and @MeSci are having such a hard time. I have no suggestions for your nasal issues or lack of sleep. So I'm just sending hugs and good thoughts!
Thanks, @Agapanthus. I can get up the hill once every week or two to the shops, but I'm not very good at viewing things now and tend to forget things! I find it easier to buy things on ebay than in the charity shops usually. To get to the doctors I tend to use taxis nowadays. I used to get the bus, but there are only two or three a day and I have trouble with time, among other things. I hope I improve... I had a car 23 years ago - had to give it up due to lack of money. Now it's lack of mental capacity! Good luck with your problems. I used to have nasal problems, but I don't tend to now. Just ears that keep blocking from time to time.
Oh that's interesting @Liv aka Mrs Sowester - someone else with just the pain then, and bleeding too which I don't get luckily. That must be very unpleasant. Yes, I guess mast cell disorder is another possibility for me, as I looked into that for gut issues at one time, and I get the symptoms in my nasal passages so repeatedly and they are odd and not quite like anything I had when I was younger. One thing I noticed is that often they are triggered by what seems to be a virus, and then I can be left with this horrible painful sensation after the virus seems to have gone (if indeed it is a virus!). I used to get it worse than I do now, in that it went on for days on end. Since using the Oil of Oregano it seems to help a bit and I have read that O of O is an antihistamine so it could be it's helping that reaction as well as the virus. I have also tried using some nasal sprays by A Vogel (Pollinosan) which also seemed to help. I will give the Sterimar a try - thank you!
Thank you for your kind words @Louie41 I did feel a tad better this afternoon as I was able to sit in our garden room in the sunshine which was lovely. My nasal issues have been up and down today but better than yesterday.
Yes, I buy most stuff online now too @MeSci as it's too much effort and energy to walk around to look at things. Glad to hear that you can get a taxi for your Dr but I guess it must be expensive to get there and back now. Mine is also moving soon, a bit further away but at least still in Penzance. Thank goodness we are both retired, eh, @MeSci - at least we don't have to go through those wretched DWP forms any more.
Yes, it's a good thing, but I became incapable of filling in forms 2 years ago - suddenly. They didn't make sense any more. From whizzing around on the internet, filling in forms and being active on the net, and selling plants, I became completely incapable. I think I'm very slowly regaining the ability. I had to get friends to help me at first. The hospital hadn't a clue.
I remember this happening @MeSci I do get small aspects of this when I am in mental overload. Today I do a couple of hours at Oxfam locally and put books online. After that I was exhausted, and found myself puzzling over the bank machine on how to get money out.....managed it in the end, but brain fog really kicking in. That is really good news that you are slowly improving! Have you done anything to facilitate that? Not surprised about the hospital. They are good on detached retinas thankfully but there is a whole raft of things they seem to know nothing about. Today my nasal pain has improved. Hooray!
Glad you're apparently improving. I hope I'm improving, not just getting used to it. There are times when I'm quite with-it - mostly in the evenings, but it varies. I don't know if there's anything I'm doing that's bringing it about. But I must try and improve my state during the day, as that's when shops are open and when appointments are! I've just ordered a load of bread from Artisan Bread Organic to see if the bread I'm using is the cause. If it's not, it might be that I'll have to give up tofu, which I have for breakfast. Hospitals obviously don't know much about ME. I don't know how long it will take them to catch up when (hopefully) the guidance is changed.
@MeSci Sometimes improvements are so tiny we don't notice them at first until they accumulate in strength. I hope this will be true for you. Yes, my nasal stuff is better, but I can see that I am still not better in myself as now I have a flare of Lichen Planus in my mouth - always a bad sign for me as I tend to get it when either stressed or unwell and it comes with the telltale sign of feeling exceedingly zapped with it. I hope the bread helps. If only it were as easy as changing one's foods. Sometimes it is! Such a thing may have triggered my Lichen Planus for example, as I may have overdone the sugar. I didn't mention ME much when I had my eye ops done though I tried to avoid general anaesthesia. The only trouble is though that the local so freaked me out anxiety wise, that I would have been better to have a general anyway. I did have one weird thing happen though in that apparently I was bleeding rather more freely than normal - the surgeon asked if I was on aspirin (I am not) and described me as a 'bleeder'. I have finally got round to getting my GP to getting my clotting tested, but it was fine!
