Good grief with everything that has been going on here would you believe something happened two weeks ago which was significant and I completely forgot to tell you all. Something I promised to share with you – cos you asked . .so just remember you asked . . .ok . . .sigh . . .
Remember my horrible mouth biopsy . . .well I went to see the oral Consultant and got the results . . .I DON'T have Sjögrens . . . that is the good news. The not so good news is that I still have no idea what is causing all the aching throughout my joints, plus my dry eyes and dry nose. The former I have had since the late 70's, the latter I am not sure how long I have had it - kind of crept up on me. Everything did appear to get better recently when I upped my Thyroxine (I have the Autoimmune Hashimoto's disease.) But in the last few days the aching is back again. So I have upped my thyroxine again - don't worry I know when I am taking too much. My Doctor trusts me to play around with my dosage - which I was told back in 1994 would need to be increased over the years as my thyroid died.
Would you believe I don't have an appointment yet to go back and see the Rheumatologist (spelling) and now I am still no further forward than I was last November . . .I think perhaps the next stage is to go and see an oncologist - see if the problem is linked to my Thyroid . . . not very hopeful though.
The aching can be very debilitating, but I do find it helps if I make myself go out for a brisk hours walk every morning after I have taken my Thyroxine (luckily my dogs encourage this - the walking that is - they aren't interested in the pills). I know when the aching is going to flare up because I start to feel tearful. My dry eyes disease also flares up and so do my stomach problems ie ulcer symptoms and irritable bowel symptoms.
Gawd I sound such a wreck . . .at least I don't get the migraines anymore and that is a HUGE relief.
I have so many symptoms that all seem to come together personally I would have thought that the Consultant's would have had some clue by now. Then again I think everything I have is similar to Sjogrens's and Hep C - neither of which I have, but which have been a red herring for the last year.
Going to have an Endoscopy on the 4th December to see what is going on in my stomach. Was dreading it - but the pain has been getting so bad now that would you believe I am looking forward to my endoscopy - note to self . . .get a life . . . I also have a breath test on the 19th November for the Helicobacter pylori bacteria - which means I can't take any of the acid reducing pills etc for a month.
Now apart from that I am feeling great . . . no not being flip - once I get myself moving in the morning and get my attitude adjusted each day I do feel ok . . . so onwards and upwards to ever better things.
18 comments:
Hi Well that is good news about the mouth biopsy. And welcome to the endoscopy club. They aren't too bad as long as you relax and breath through your nose. Practise doing that well in advance and you should be ok. I am horribly claustrophobic and I managed, so good luck.
I am not sure how old you are. A mere little sprog I think, but one of my menopause symptoms was aching all over, I didn't realise this at the time, only when I was through and realised the aching had stopped.
Take care love LWB
Oh you poor sausage...that sounds just horrible. What a bewildering set of symptoms. Heck, I hope they get to the bottom of it. I've never had an endoscopy (and from the sound of it, very glad I haven't) but hope it goes OK - by the sound of it, take the drugs!! - and that it can point up something useful.
So so hope someone gets you some answers soon. Can't believe you are having such a lousy time all round. So not fair.
jxxxxxxxxxxx
It's good to know that once you have got yourself motivated you feel okay. You have had such a lot of unnecessary crap to deal with recently. As always, and I think I speak for everyone, our support is forever with you. Take care.
Crystal xx
(sweet comment from Crystal, and very true)
So glad the mouth biopsy was ok. You have so much to put up with, that I feel guilty about my own little symptoms.
I do hope that one day they will be able to find something that will give you relief.
Love F XXX
Thank you to all of you - berlimey that was quick - I haven't long put up this blog.
Poor you, what a lot to go through. But how cheerful you sound! That must be what carries you along, your strength of will.
It's seems very unfair that you are trying to cope with these symptoms without knowing what you are dealing with - I hope you get a diagnosis soon and can treat whatever's bringing you so much distress. Don't know what else to say apart from offering my cybersupport (is there anyone you want to be poked in the eye?).
Love Chris
You poor thing. And im sure your stress hasnt helped. You need a holiday, but you had one didnt you?
Lets hope you get sorted soon.
xx
Poor you, at least the mouth biopsy came back clear, but of course the other things are worrying and nasty to be aching all the time. Do hope they manage to get to the root of the problem for you so you can get on with sorting it. Thinking of you xxx
Oh I would have mentioned you in the Get Well Post, sorry I have only just read this. I am so sorry that you are suffering so. Have you tried yoga? I do it every morning and it cures the stiffness I wake up with (due to the aromatase inhibitor tablets I am on). A shower first, then the yoga, just three records worth as I do it to music.
I agree with the others, you have all our support and good wishes, you're a star.
Having just left you a pm comment over in the forum, I do feel a bit of a fool now coming upon this.
I do wish you better health, from where ever it may come. Anyone who does the good that you do is someone who certainly should be able to enjoy the basic lack of pain that many take for granted.
I guess you just keep the tests going. And the walks, too.
Want to come over to try out the wisdom of the New York docs? I am sure that Scotland's medics are very wise!
xo
Oh poor you! Forgive me for saying it but you sound most uncomfortable. Something is clearly wrong somewhere.
My own, admittedly anecdotal, experience is that doctors are really pretty feeble when it comes to treating whole body conditions. They tend to isolate a symptom and treat one symptom at a time without looking for the underlying cause of a problem that may be breaking out in a number of areas in different ways. A severe lack of Vitamin C (I am not suggesting it is this) would cause many of the problems you list.
Have you thought of going to see a good herbalist? I would certainly start with diet - and particularly dietary supplements. Personally I find these most useful. I had great problems - acid and so forth - with my stomach at one time - hospital visits, barium meals, endless tests, doctors baffled. But I tracked it down myself in the end to an allergy to coffee. I gave up coffee and started to eat bio-yoghurt (Danone Activia) and the problem disappeared like the morning dew.
(The doctors of course refused to believe this).
When conventional medicine fails it is worthwhile trying the alternatives.
And then there are the wonder drugs - white wine (I am not joking, provided you don't have an allergy)in moderation, aspirin - dispersible if you have
a weak stomach taken daily - assists with most things - and progesterone cream which seems to be a general sorter outer, make you sleep betterer, kind of a medication (look it up on the internet). These might help alleviate the symptoms. But I would invest in a good herbalist.
Do hope you feel better soon.
Fxx
I think Fennie has made some good suggestions. Glad the biospy was OK, but I can imagine how horrible it must be without a clear diagnosis. I hope you get practical help and advice really soon. Good luck, and lots of love.
I hope you get some answers - this must be so distressing. Just getting some answers will be a relief.
Oh I had no idea you were feeling grotty. I wish I had a lot of wise words, as you had for me. I was so grateful for your support and now I send mine. I just hope a diagnosis is found asap so you can get on with the buisness of getting well.
I must tell you what a lifeline Purple coo is, fun,supportive,educational and full of such lovely people. Thank you x
Oh you poor darling Westerwitch, do hope you can get to the bottom of this with some positive results, and free from pain.
I have dry eyes and dry nose for most of the time, but I have been diagnosed with Sinusitas. Nasal Antihistimine Spray used twice a day to relieve this helps.
You have had so much stress lately, so I do sympathise, it does not help at all for you when you are experiencing those symptoms. Nursey Camilla sending you a great big hug.
Love Camilla.xxx
You need House on the case.
Seriously though hope somebody comes up with something soon as it sounds pretty miserable to me including all the testing to no avail so far. Love the photo of the mountains below.
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