Hello everyone I'm new to this please bare with me
Posted , 8 users are following.
I have been ill for a few years now, sent from pillar to post rheumatology, physio appointments. No one seemed to have joined any dots with my problems.
Dry eyes, mouth, blocked saliva ducts, dry mucous membranes, painful joints, getting worse and worse, fatigue to the extreme.
the doctors said physio and rheumatology, they did X-rays DEXA scan, they said, oh you have osteopenia, and mild poly arthritis, but the symptoms were so severe, it just didn't add up to me. My bloods were ok apart from borderline hypothyroid, on repeat they were normal. Although thyroid antibodies are raised.
My job is 13 hours a day to get up out work and back 2-3 dayside/nights a week, many days I couldn't walk properly, sleep or rest either but kept on going as no one could tell me what was wrong, I thought it was all in my head, a menopausal nutcase really. I tried not to complain, but it was clearly on my face I could see my deterioration, no one ever commented.
recently, on 2 holidays I could barely walk the pain in my whole body was worse than ever, I couldn't move, felt like a block of concrete and my head pounding, no normal paracetamol/ibuprofen worked, no doctors would give me anything else, as they had obviously made their minds up I was a fake, or so I felt.
But in April, May and June I was ill had 2 weeks off work and worked the days I could the rest of it. Went several times to the doctors, oh you have sinusitis, or sore throat or D&V all repeating itself, again and again. Antibiotics not really effective. Bloods this time showed raised ESR and in 5 weeks an appt with the rheumatologist, so again I was left to struggle.
I went to the hospital, bloods repeated and one test for sjrograns syndrome positive, left awaiting my fete, will see them this Friday again.
3 days later I couldn't walk, my head pounding especially when layed down, I went to see a relief GP, who started me on 20mg prednisolone daily, some effect but now on 30mg daily as she wanted a better effect, things have started to settled but my spine still very stiff, and of course feel dreadful on the steroids.
now worried I have GCA as well as my undiagnosed possible PMA went on so long undetected.
sorry for rambling but this is pretty much my history, it helps to write I suppose so thank you for stating with me on this first post.
as I said it's all mew to me.
0 likes, 16 replies
audrey25251 adette01750
Posted
adette01750 audrey25251
Posted
Thank you Audrey for that, I have struggled with my hearing for sometime now but my hearing tests have been normal. I will ask for a repeat.
Yes thank goodness the GP was on top of her game, I can't tell you how low I was feeling, she was heaven sent I think. Unfortunately she is only covering for maternity relief, so leaves at the end of August, not so reassuring.
dea13 audrey25251
Posted
Hi, how is your sight now? I also have PMR AND GCA : Taking now 40 mg of Pred a day as they were not sure about the GCA as I had been on the Pred for 5 weeks prior for PMR... I do get the temple headaches and sore tender scalp. My eyes have been ok up until a few weeks, and only when on my computer. It's a great fear that we could lose it altogether, will the Pred help stop that happening? I'm in Australia and they don't seem to know alot here yet. Are you still taking Pred? and for how long and how much?
Cheers Dea
audrey25251 dea13
Posted
I'm afraid I 'm not going to be much help or comfort to you. Lost the sight in one eye totally 15 years ago and despite going to a leading hospital (Moorfield) GCA was never diagnosed. This time round they were again a bit late in diagnosing and though I went on to 60mg I have lost most of the sight in the other eye. You seem to have caught it early so hopefully you'll be OK. Any signs of sight deterioration and if I were you I'd be off to see your GP/rheumotologist for an increase to 60. You're not alone in Australia - not a lot is known anywhere about PMR/GCA (what causes it, why is there no treatment other than steroids, why it (hopefully) goes away of its own accord).
FlipDover_Aust dea13
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dea13 FlipDover_Aust
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Hi, I'm in Cairns : lol other end
FlipDover_Aust dea13
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I was up there for the eclipse two years ago - had a great time. Mr Flip is into astrophotography.
I currently work with some one that lives in Atherton - she's works 'remotely' of course since the office is here. What a life!
I don't know when we'll next get up that way, but maybe we'll still be in contact and I'll come and visit. We have a rather luxurious caravan and travel as much as we can - in fact, PMR is the reason we have such a 'luxurious' van - we had an old Jayco pop-top - no loo - and last November we stopped in Berry, NSW for the first night of a month's holiday. After having to walk 200m up a hill in the rain, at 2am, I chucked a tantrum and demanded that Mr Flip let me buy a bucket with a lid to piddle in during the night. He took me to the closest caravan dealers and we spent an ENORMOUS (obscene really) amount of money on a three roomed caravan that would put most houses to shame lol We affectionately call it The Bucket.
Anhaga FlipDover_Aust
Posted
dea13 adette01750
Posted
Hi, like you mine PMR went undetected for years: I was just diognosed 3 months ago, put on 20 mg of pred, but then told my Dr that I was getting the temple headaches and tender scalp after about 2 months, so they put my preds up to 40 mg a day now for 1 month, having blood done next week to see how things are, but I feel I may be on the high dose for awhile
I hope all works out for you: I have just come to terms that this Auto Immune illness will be long term, and I feel better for knowing that and acceping now. This site has helped me a lot> Cheers Dea
adette01750 dea13
Posted
Yes I am starting to get used to the idea, but family and friends not so. They don't know how it affects everything we do and how can they they don't have it.
well maybe I don't, but my GP seems sure, I will see what the consultant says Friday.
You take care, I hope they did a scan on you re headache, so they are not missing anything.
jeanne333 adette01750
Posted
It is hard isn't it, to put on a happy face, when you are so stiff and so so tired. Your story, sounds a lot like mine. I also have dry eyes and mouth, but my PMR pain presented in neck and upper arm area first. I described my walking or what I call walking, as walking in a flooding crick in water almost up to your knees. My hands, fingers, feet and toes also cramp up. My hands and fingers will either freeze into a claw or twist up, they look deformed. I can wait till they unfreeze (maybe 2 minutes) or pull them back into a normal position. Sometimes there is a really sharp pain and sometimes not. It takes me forever to get anything done, due to the fact that I get so breathless on top of the slowness of my motion, so have to stop and rest frequently. Im trying to stay positive, at 20mg pred. I feel almost human, but at 19mg. I'm not so good. This time, I went 3 months, before dropping from 20 to 19, and I think the drop to 18 will be at least that long. My RA, has now prescribed a pain med, to take the edge off. I'm not sure about that approach, but after the severe reactions I had with Plaxaquil. (sp) I refuse to take any of the RA meds. My blood levels are within range when on 20mg pred, but off, they are elevated. I will stay on Prednisone and take my chances. I want the best quality of life that I can achieve, so if it is 20mg pred, so be it. My reasoning is, I'll be 75 in a few weeks, have many other health issues, my heart, lungs, kidneys, thyroid and parathyroids are all damaged and my list of prescription meds is long. The side effects of the meds, they can try, are just as bad as the prednisone, and at least pred works to relieve the symptoms and inflammation. So I guess it is keep on fighting the PMR and put on that happy face, and hope tomorrow is a better day.
adette01750 jeanne333
Posted
Thank you for your reply, yes it seems like it could be an uphill battle with a few fights on the way, Friday will tell me if lupus is also on the cards too.
I think my pain is sorted on the steroids but my sleeping, legs unsettled of a night are an issue now, I have bags under my eyes so deep in justv2 weeks.
Your RA sounds dreadful, puts me to shame I'm so sorry for your pain, I hope you do get good days if you can call them good.
take care
bob73443 adette01750
Posted
Adette,
I am so sorry that you are feeling so poorly, and that you have had to go through all that you went through. I hesitated to write this post, but I decided to do it "just in case."
My wife suffered (and still does) many of the symptoms you suggested. No-one knew what was wrong until she was tested for Lymne disease. To make a long story short, she went undiagnosed for several years before she was finally tested -- and it was positive. Lymne is the "great imposter," presenting as so many other things and has DEVASTING EFFECTS if not addressed.
If there is ANY CHANCE AT ALL that you have been bitten by a tick, please get tested for Lymne (you don't have to see the tick -- the worst ones for Lymne are the little babies that you can hardly see).
All the best,
linda17563 bob73443
Posted
Hi Bob, I was interested in your post...because the symptoms that are described have been misdiagnosed for years for other diseases...ME/Fibro. Have had these for many years myself, as well as PMR. The reason it interested me is....where did your wife get tested (are you in the uk?) if you don`t mind me asking. From what I`m aware, there isn`t a specific test for Lyme disease here, some people have had to pay for a test to be sent to USA. Recently there was a famous man (can`t remember his name) that has several members of his family with Lyme disease, one son bedbound.....he was so disgusted with lack of testing and help, that he has paid lots of money for research into it! From what I gather, if not "caught" early in first couple of weeks anti-biotics don`t help....
.
I hope your wife is getting help and relief.....too late for some....such a shame.
bob73443 linda17563
Posted
Linda,
We live in the USA, where Lymne is still not recognized as being the devastating disease that it is, except for a very few specialist doctors who are seen as quacks by the remainder of the profession.
There are a few very specific tests for Lymne. I don't know their names off hand. There are OTHER bacterial conditions that accompany Lymne disease -- Bartonella being one of them -- that are almost always present with Lymne. The Bartonella test is very specialized and takes weeks for results.
My wife is an unfortunate case, because she is intolerant to the very high doses of antibiotics that are needed to get to the Lymne and Bartonella. It might be a life-long battle. She's 67. I'm 69.
If you need more info, write to me privately as I know this is a PMR forum and not a Lyme forum (although there IS A Lymne forum here also).
All the best,
adette01750 bob73443
Posted
Thank you Bob for your post.
i was bit 15 years ago not sure what with and all the area was red blistered, needed antibiotics and steroids to settle(5mg) daily nothing like the doses I'm on now, only a short sharp shock dose.
ive been ok really until the last 5-7 years then started with joint pains etc as I explained on my initial post.
I might check with the rheumatologist Friday about ruling it out.
Thank you.