LUPUS UK
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All good things must come to an end?

All good things must come to an end?

I have been lucky to experience a good few months of health and energy levels. I've been the closest I can get to the old me, except for my medication and aches and pains etc. And this on going dry, unproductive cough.

But this week I'm all in.

Fatigue has appeared again, forcing me to bed every day for rest and naps.

I'm not sure if what I'm experiencing is bursitis or sacroiliac joint inflammation etc - but my pelvic area is aching and burning and I'm getting shooting pains down my legs.

My hips hurt and my knees are giving way.

But unlike the last time my bursitis became acute, needing my first steroid injection and I was tender on the outer side of my hip/thigh and I couldn't drive or lie down or sit without fighting back the tears - this pain and aching and burning is inside my pelvic area. I do have tenderness on my outer hip but that is normal levels for me.

Then yesterday I noticed a small red sore on my head, near hair line / forehead with hair loss.

I still have the dry cough.

Interestingly at my 12 monthly eye test, my optician told me he could see signs that my eyes were dry.

This has been very noticeable to me this week, I have felt the dryness and had tired eyes. And my mouth has been very dry.

I still have tinnitus.

And I can feel myself becoming impatient and grumpy.

I'm hoping this is a minor blip. I've had energy and so have been doing a lot. Maybe I've done too much and pushed too far. But it's so hard not to get carried away when you feel good. We all crave normality. But maybe I haven't paced myself nearly enough and have brought this on myself?

I have an appointment on Monday to talk to my GP about my second appt at London Bridge on 27th October.

So I'll be talking about trying an asthma pump to see if my cough is asthma related and getting some eye drops, Consultant recommended Hylo Forte?? Not sure if I remembered that correctly.

So, only time will tell.

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Sounds hellish for you Wendy.

Definitely Hyloforte for the eyes asap! X

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He also told me as well as wearing glasses for driving, to help eye strain etc, as actually just OK in legal limit, I now need reading glasses. I have been in denial about this. I have noticed for months now that I am holding small print away and seeking lights to be able to see and read stuff. He says that this is not related to the possible underlying Sjogrens. But is normal for 40-45 year olds. So now middle age is playing a part too. Nothing works like it used to! I have read that wearing glasses can help protect your eyes from drying winds etc. Do you wear glasses??Have you found this? Trying to read and find answers to help prevent this all getting much worse. Xx

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I’ve worn glasses for many years now - very long sighted with stigmatism. Have two pairs, one pair are cool prescription shades for driving and photolight sensitivity. The other just my trendy everyday varifocals. I think glasses are really cool and can hide a multitude of blemishes! It’s such fun choosing frames - my boys always choose mine!!

I was at the optician about 2 weeks ago and he noticed a deep chip right in my line of vision. I was horrified as thought I’d have to pay and I only bought them in January! He found out that I had paid insurance as his colleague had urged me to do so replacement lenses are free! I’d forgotten that I’d insured them yay!! He then said that the chip was deep and these glasses are made with extra strength glass protection so it must have been something very sharp that hit the lense with force. We looked at each other and said “oh my - thank goodness for glasses eh?!”

I trip and fall rather a lot due to Neuropathy and often stand too close to curb for ages waiting to cross a road as I can’t look left or right without losing my balance. So maybe a bit of glass or grit flew up?

Anyway I love my glasses!!

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I find in the summer that wearing sunglasses helps keeps things at a tolerable level. I seem to lose more moisture in warmer weather. Hyloforte drops work well too. I am also close to the point of needing reading glasses. I thought I had at least another 10 years but like you I was told this happens in early 40's.

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I just hit 40 and had to get glasses this year as well. My night vision is awful. Who knows what is related to what. Chicken and the egg...

I've just gone through a better patch and am exhausted today. We just have to remember to rest or our bodies will decide that for us!!

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Very true! X

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Hey hun get ur breathing checked for copd, lupus is sadly known to attack themx

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Hello! Thanks for your reply. How are you? I had asthma as a child but into my 20s I managed to stop using my inhaler all together. I did have breathing problems when my allergies worsened but nothing serious. When diagnosed in 2013 I had the base line tests, lung function etc. I was told all was OK. In April this year Dr K in London told me in his follow up letter that I had reduced air entry both sides - not exact wording but something like that. At this second appt he raised asthma as a possibile cause for my ongoing chesty cough. He said to try using an inhaler to see if it helped relieve the symptoms. He said it was a way of ruling asthma in or out, without any worries about dangerous side effects. Of course a dry cough can be caused by Sjogrens - which he has said is a possible underlying condition due to dry eyes etc. But the dry cough can also be caused by MMF and I'm in the maximum daily dose of that. So I guess we'll have to attempt to rule out the possible various causes. I've no idea how often those initial tests for a base line, should be repeated to check for any deterioration?? I will bear this in mind. How are you doing? X

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Never blame yourself for perhaps overdoing things when you were feeling well Wendy. I think ver few of us would do it differently.

Unless your optition advises otherwise ( mine sighed but said OK) get yourself a bunch of cheap readers. I mean Poundland cheap. There are lots of funky colours and patterns if you fancy them. That way you'll always have a pair close by. I speak as one who knows.

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Yes, good idea! I haven't purchased any reading glasses yet. I wanted to discuss with my husband and have a think. My husband thinks that if you start relying on glasses like that, that your eyes become lazy, rely on the lenses and deteriorate even further. Not sure if that's accurate. But I will see how I cope over the next few months. How are you Lupiknits? X

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Oh, Dear Wendy,

I was sorry to read your post, hearing how poorly you feel, after such a positive time lately.

I was at GP yesterday for hospital results and because I was bed bound, on Tuesday. I too, have been suffering with the awful pelvic pain, back pain, leg and ankle pains. I have given into prescription for codeine. Hospital ultrasound has shown tendonitis left shoulder. That first symptom appeared 3 weeks ago. I have to have ultrasound on my legs now, got two lumps, as well as heavy, tight feeling, and pain. Physio booked for next week (meanwhile, friends booking Xmas days out, ha ha), and have been told, I will see an endocrinologist!!! End of December, but hey, not seen an endocrinologist in 25 years, so December fine with me!

Back to you, what you describe, is how first, ever experienced, my first ever flare, of autoimmune disease symptoms so awful.(Despite having thyroid meds for 25 years). That flare, started a cascade of chemical testing, hospital visits, GPS, etc... until I was diagnosed sjogrens. Interestingly, rheumatologist has said the pelvic issues etc are probably not Sjogrens related. My current bloods are still showing query lupus. So, maybe? Who knows?

Eyes! Ouch! I know the pain, the utter discomfort, definitely sjogrens related, and probably lupus. So, I use toxic free eye drop, and my best find (optician advised), blephasol lotion. I cleanse eyes morning and night with lotion, more often during flare. So refreshing! I wear prescription glasses, thank goodness, as they give extra protection (twitchy knows, flying kerb grit - bless you twitchy!). I also have an eye mask, bought from Boots. You pop it into microwave. Omg! Could not! Manage without eye mask during flare. Get one! You will love it. The ease, the comfort, the blessed relief, when you have to lay flat on bed with eye mask on. My eyes feel as though they sink back into head, I think thyroid symptom. After mask, ease, ease, yes please!!

At first flare up, pre sjogrens/query lupus, diagnosis, I lost hair, had numerous sore spots over body (looked like yours), that lead to me being referred for chemical testing. I now use prescribed dermatology products, every day, to keep them at bay. During flare u, I use prescribed Mytosin (think that's spelt right, its upstairs lol). So, I am on top of that!

Hair loss, due to autoimmune, ctd, (as most of the symptoms are in my opinion). Well, have you had thyroid checked? I went onto (or was the cause? I think so..), develop autoimmune thyroid severely, once i got tested, diagnosed hashimotos, I booked private appointment with specialist. On New regime for thyroid, hair loss stopped. Feeling better in many ways, brain fog, fatigue improved, not so good other ways, joint pain, aches, sweating (though sweating does remove toxins from body).

Unproductive cough. Yes, first flare, I had that for weeks, weeks, weeks.. wore me down. GP offered me an inhaler. I said no. I should have said yes. Later it was discovered my thyroid had shrivelled into a fibrous mass, so an inhaler would've helped, I'm sure.

Well, Dear Wendy, I do hope some of that helps, if not, know you are never alone. We are all thinking of you. These symptoms are so horrible. But, as we know, they too, will pass.

Wishing you soon, to be back to the lovely symptom well managed, Wendy. Till then, listen to body, and rest. XX

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Thank you for your lovely, thoughtful reply, as always. I am going to look at that eye mask. I am being careful to wash my face twice a day etc. I have always used a warm flannel and this helps, especially with getting rid of the styes I've had.

I have experienced hair loss and hair thinning before. But after my April appointment at London Bridge and being told to wear a hat everytime I went out, I thought I had this under control. I've only noticed 3-4 very small bald patches since then. At my diagnosis a Dermy told me that I had scarring alopecia and that my hair follicles were permanently damaged in some places, so hair would not regrow. Luckily for me I have thick hair and a lot of it, so although that Dermy was correct, there are no completely bald patches, just thinning noticeable to me. But this recent patch is on my forehead hair line so a little more noticeable.

So now Dr K has said possibly underlying sjogrens and my optician says he can see signs of dry eyes. So a whole new area for me to research.

Anyway, in bed today and GP tomorrow. So I will discuss all then. I definitely want to try an inhlater.

Sorry to hear you are having aches and pains and mobility issues. I'm sure it's very frustrating. Please let us know how all your appointments go, won't you.

Take care.

Wendy x

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Is this the eye mask you use webar4780?

boots.com/the-eye-doctor-ho...

Wendy x

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Sorry for delay, Wendy. Yes, the very eye mask! It's so good!

I had MRI yesterday, long story short, I was unwell. Legs like lead again, yet numb feeling bow knees.

Have bulging discs, lower back, to add to tendonitis of shoulder.

Had brilliant care at the hospital despite GP not returning my husband's request for call back 48 hrs ago.

Hospital Dr says I need another peripheral neuropathy test. I am v v hopeful that physio, this Thursday, will sort limbs out.

One of my blood tests has come back, repeat in 12 weeks query lupus..

Have you ever had lead legs, or numbness?

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Thank you so much for the tip of the Eye Doctor Microwavable Hot Eye Compress. I collected mine yesterday from the chemist after ordering it in and I used it twice last night. It feels SOOOO good. Great tips. I am very grateful. Could lie there with it on all day. x

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This is the mask I use Wendy - half the price and all washable and non-stinky: boots.com/optase-moist-heat... Saw it at the BSSA Sjogrens medical meeting last month and bought one in Boots afterwards. I'm finding it very soothing.

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Oh Wendy I’m so sorry to read that you’re having a rough time again, it’s so disheartening when things seem to go well for a while. As for overdoing it, I think all of us who suffer the awful fatigue and pain do as much as our bodies let us on those good days, it’s lovely to have days where you feel more ‘normal’ and are able to just get on with life! This silly illness seems to rear it’s ugly head at any old time😫 sometimes there seems to be no rhyme or reason as to why, despite treatment!

The glasses thing hmmm sounds about right, I was about your age when I noticed a change, by the time I was around 47 I was in varifocals, I was fed up with taking my reading glasses on and off all the time, the downside is that they can be expensive!

I have dry eyes and mouth too, I use Hylo Forte and lacrlube at night that seems to help.

I hope this is just a blip and that now you’re on treatment that seems to have made a difference perhaps this flare will be short lived.

I have everything crossed for you🤞

Sending lots of hugs and keep resting up when you can.

Diane🌺🤗xxx

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Hello Diane

Lovely to hear from you, as always.

Yes, it's an ever chnaging / evolving illness. Just when you think you've cracked it, a flare creeps up or new symptoms come along. This little blip brings an extremely dry mouth as well - new to me! I am drinking more than usual and I've always drank plenty of fluids anyway. I am weeing a lot more as a result! I always keep sugar free chewing gum in the car and so this is being used too.

Although it is horrible to feel this way, after a relatively normal few months, I am not panicking. The peace of mind of having steroids at home to self prescribe when I feel I need them is massive for me! After over 3 years struggling without such a back up plan. With Christmas coming and three children with activities etc, if this carries on or I feel I am getting worse and not coping, I will follow Dr K's instructions and start a months course of steroids - only 5mg for 2 weeks and 2.5mg for 2 weeks.

How are you doing?

Wendy x

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Hi Wendy, I’m glad you feel more in control of this flare despite new symptoms and feeling rubbish, it’s hard to feel positive about a flare but if you can lessen the stress it’s got to be a good thing, it’s something I find hard to do and have to try really hard not to get upset and to tell myself to just go with it, I know my body is capable of having better days so I need to not be so hard on myself and just ‘be’ and hope it’ll pass soon.

I’m having a tough rough time at the moment which is really frustrating because I was actually feeling a bit better, my fatigue was less and I was coping well each day but then two weeks ago I fell down the stairs and broke my ankle, (I was hoovering) two days later I traumatised my throat by choking on a tablet which still doesn’t feel right then last week I started feeling really ill and couldn’t swallow properly, my throat has been raging sore, high temp, earache, I had the dr out, she thinks I have some sort of a virus on top of traumatising my throat, Saturday was my birthday and I felt a bit better, I had my family here and managed to go downstairs for supper but then in the early hours on Sunday I collapsed in the bathroom, it took all my energy to get out there hopping on one leg using the Zimmer frame ( as you can imagine this hasn’t helped my bursitis in my left leg)) I sat on the loo felt awful next thing I knew I was on the floor, don’t remember falling or hitting the floor, no idea how long I was down but when I came too I tried my hardest to call my husband who managed to get me back on the bed, my son in law called the paramedics, my poor daughter was so sweet trying to keep me awake and I know they were scared and I was scared, the paramedics were with me for an hour and very thorough, they came to the conclusion it was postural hypotension basically my bp was in my boots and I passed out, apparently I looked like death, and now I’m pretty sure I’m in a flare, I have no energy, I’m spaced out, I’m hardly eating, feel nauseous all the time,I ache, my mouth has been so dry, my hands are so painful too, still have a lumpy sensation in my throat and have a raspy dry cough!

I’m pretty much bedbound at the moment! I just wonder why I couldn’t just have a broken ankle but still feel okish, it’s as though one thing slams your body and the rest of you just can’t cope...the domino effect! UCTD+CREST+CKD+broken Ankle + viral infection = FLARE ✅

The positives are...my right hip bursitis has been so much better because I haven’t been weight bearing on it 👍🏼 I’m never hoovering the stairs again👍🏼 or I’m investing in a cordless hoover👍🏼, I think that’s about it!

I hope you feel stronger each day especially with Xmas approaching and your symptoms lessen but yes it’s good that you have a backup plan with the steroids, it does help mentally doesn’t it when you know you have something to fall back on.

Take care Wendy, sorry this is long!

🤗 big hugs to you

Diane 🌺xx

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Hi Diane

So sorry your having such a rough time. Last thing you need is a virus on top of broken ankle!. I do hope you start to feel better soon. Just promised to let you know that my potassium blood test was normal thanks to extra pitassium foods. So next on agenda is an ECG on the 12 th Dec because I've got chest symptoms that won't settle!. Always something with us!. You take great care, sorry you had your birthday spoilt. Big hugs. X💐😊💚

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Thanks Helen, it never ends does it!

I was wondering how you were getting on, I’m pleased your potassium levels are normal but I guess if they hadn’t been it might’ve explained the chest symptoms so I’m sorry that this is still ongoing for you, the 12th seems ages away doesn’t it? I’ve got my fracture clinic appt on 13th and that seems ages yet! When you want time to fly it never seems to and when you don’t it does😫

I hope your symptoms settle soon, what are they like? I’ve been getting a lot of palpitations and pounding heart, I’m aware of my heartbeat all the time but when it’s banging away it’s exhausting, no pain so that’s a good thing!

I had my bt results from Rheumy appt and my ANA is 1:2560 (very high) and positive Anti Ro and low lymphocytes, the rest of the ENA panel was negative.

Hope you’re having a decent day...

Big hugs to you🤗🌺xx

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Hi Diane

I thoroughly agree with you about time flying when we don't want it and going extra slow when we need something badly!. I've got a fracture clinic follow up on the 6 th to double check foot. Very thorough!. I do hope you get good news when you go on 13 th. Does seem ages three weeks and yet Xmas is fast approaching!. I'm getting same chest symptoms as you along with pain now and it is exhausting!. Have you had your heart rate checked recently?. Mine yesterday was 110 Bpm but normal rhythm and normal BP. It is making me feel poorly not helped by leg nerve pain. I'm having my injections on Monday and maybe they will pick up on this heart rate too as they check these things then!. Your blood results are higher than mine no wonder they know better which CTD's you have!. Do hope your feeling a wee bit better in yourself. Big hug. Helen💐😊💚

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The paramedics did 2 ecg’s at the weekend and my bp had returned to pretty much normal

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Sorry sent that before I meant to!

I told them about the pounding fluttering heart but they said I need to go back to GP for bp check but I can’t at the moment and I keep calling my dr to talk to her! I do get palpitations normally but it’s the fast heart rate, it’s in the 90’s resting and when I get up to hop around it goes way over 100 but bp is normal! Sorry you getting pain as well, that’s not nice for you😞 My rheumy put me back on double dose of bp meds and I think it’s a combination of those tabs, being pretty much bedbound for two weeks and a virus, if it doesn’t settle when I start getting a bit more active I’ll speak to gp again, I think she must be sick of me!

Hope the injections give you some relief Helen.

You take great care too.

Big hugs

🌺🌻🦔xxx

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Hi Diane. Good idea to talk to your GP. She won't be sick of you she knows what a tough time your having. I'm going to talk to mine as don't like this pain with stronger palpitations!. Can't wait three weeks for ECG it's ridiculous!. Talking to you has made me wonder if injections will still go ahead with racing heart?. At least they check it before and after. Mines over 100 resting!. Thanks for your good wishes. Keep me posted how you get on. X😊💐👌🏻

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Helen you’ve given me the push to call my GP tomorrow 👍🏼I read the info leaflet for my bp tabs and it says stop taking them if you faint due to low bp or have racing heartbeat and palpitations, so I took half dose last night which I was originally on, this morning my heart rate is in the low 80’s and not pounding as bad so we’ll see!

I hope you’re still able to have your injections on Monday, fingers crossed for you that they also bring your ecg forward!

Keep me posted too, will be thinking of you...sending hugs🤗 🌺xxx

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Hi Diane

How did you get on with GP phone call. Does look as if it's your BP med causing the symptoms. I will look at the patient leaflet of mine. Do hope you get it sorted. I've decided to ring the surgery for cancellations and see what Monday brings. At least it will be checked again there and leave it to fate!. It's good to talk, you've helped me. Hope it's a better weekendfor you. Hugs HelenX💐💚😊

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Hi Helen, I’ve just spoken to my GP she wants me to stay on the lower dose of perindopril (bp tabs) and take my bp 3 times a day for a week then email her the findings and she’ll let my rheumatologist know what’s happening, I’m glad I rang her it’s put my mind at rest, my heart rate today is in the low 80’s and my bp is stable and my heart isn’t doing that exhausting fast pounding! So I’m thinking maybe I was on too high a dose, she said I can have a blood test for kidney function when I go to fracture clinic so we can see if that’s improving on the lower dose of bp meds.

Let me know what your surgery says. I hope you get some joy!

What bp tabs do you take, have you been on them for long?

Thanks Helen, you’ve helped me a lot too.

Big hugs 🌺💐xxx

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Hi Diane, that's a really good outcometo your phone call. It must have put your mind at rest and in turn your BP will reduce. Glad there is improvement to your heart on the reduced dose!. I've just looked at the patient leaflet for my drug, Nifedipine and it can cause fast heart and palpitations!. I've been on it three years so I'm going to speak to my GP on Monday to see if he'll change it and miss a dose over weekendto see if there's an improvement!. I take it for Raynauds and luckily my Rheumy recommended another drug losartan in his letter so I'll see if I could switch to it!. I'm doing research at the mo to see if it would be OK to try!. I'm so grateful to you and glad I've helped you. I'll let u know how I get on. I'm glad your getting such thorough care. Have a good weekend. More hugs helenX💐😊💚

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Thanks Helen, I’m glad I was of some help, I hope it is something as simple as changing your meds and that it’ll all settle down, it’s exhausting coping with it all and trying to stay on top of things😩 and yes that’s good your Rheumy has already suggested a different bp drug at least that gives your GP some guidance.

let me know how it goes on Monday, will be thinking of you.

Have a nice weekend if you can and enjoy strictly 💃🏻🕺tomorrow 😃

Take care

More hugs to you too🌺😘xx

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Hi Diane. Thank you for your lovely reply. I so agree that sorting all this out is exhausting!. I've done it for 31 years and it doesn't get any easier!. Enjoy strictly too, Debbie didn't like being in the dance off last week. That was a shock!. Take care and I'll be in touch. Appreciate your good wishes. Hugs helenX💐💚😊💃🏿

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Oh Helen 31years and I thought 15 was bad enough! It’s a long time to struggle for😞 I agree it doesn’t get any easier.

No I wasn’t expecting Debbie to be in the dance off, I wonder who it’ll be this week! I hope it’s not Davood 😍 ‘be still my beating heart’ ( literally) 💓😆

Enjoy, big hugs 😘💃🏻xxx

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You two! 😜🙈 xx

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😂🙄🤭😃🕺🏻Xxx😘

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Hi Diane. How are you?. Still better with less of that BP drug I hope!. I tried mine over weekendand there was no difference so I didn't speak to my GP. Instead I had my injections successfully and once I get rid of backache I will be painfree!. Will be wonderful. Hope I get longer relief this time. I think the injections have helped my heart rate. Still palpitations but we'll see!. Did you enjoy Strictly?. Shock seeing Alexandra in dance off!. Competition now really tough between them!. Been a good year again!. Take care. HelenX💐😊

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Hello Helen, I was thinking of you, I’m glad you’ve had your injections, fingers crossed you get some relief with them and hope the palpitations settle soon, only two weeks and my boot will be off and you’ll get your ECG...YaY, can’t come quick enough. My palpitations have been better, I still get them and a bit of a pounding heart but it’s nothing like last week, I’ve got to take my BP 3 times a day and email it into the Surgery on Friday and my Gp will write to my rheumy to let him know what’s been happening. I have been feeling a bit better the last few days and am starting to weight bear more so feel a bit more positive, it’s been a tough few weeks, just taking one day at a time.

I was sad to see Susan go, she did well and I thought she danced well and was light on her feet, all the good ones left now and the competition tightens up, can’t believe it’ll all be over in a few weeks😞. Enjoy 💃🏻🕺🏻

Take care Helen, thanks for letting me know how you got on yesterday.

Big hugs 🤗

Diane🌺xxx

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Hi Diane

You've had a really lousy time and you must be countingthe days till the boot comes off!. Is it really same day as my ECG?. Do hope we bring each other luck!. It's good your weight bearing a bit more, help your spirits no end, don't know how you've coped!. It's really good your BP resukts are being well monitored and will be sent to Rheumy!. Glad your palpitations are better, hope they go completely!. My backache is much better today and leg is really good. I can concentrate on chest and watch the palpitations!. I can't believe how fast strictly has gone !. So close now as quarter final and soon be Xmas. Got to start card writing but feel so tired!. Fingers tightly crossed for boot off on 12 th!. Big hugs to you and take care. X😊💚💃🏿💐

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Thanks Helen, my fracture clinic appt is 13th, I knew it was close to yours! And I was just thinking the same about the card writing but like you I feel so 💤 tired, I don’t think I’ve got the brain space to do them either 😩, I feel like just putting a xmas message for everyone on FB this year and sending cards to elderly relatives who don’t do fb!!

I’m so pleased you’re getting some relief now, being in pain is all consuming, long may it last for you🤞I have everything crossed for you.

Big hugs to you Helen.. 🌺💃🏻😘xx

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Hi Diane, that's a good idea about the cards and FB!. Look at the rough time your having, lots of people wouldn't do them coping with less!. Keep me posted how the 13th goes. Lots of luck and take care.X💐😊💚

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So true, I think I’ll do that then👍🏻🎄Hope the 12th goes ok for you and you get some answers . Please Take care too. Keep warm Big hugs 🤗🌺💝x

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I'm on FB too Diane if you want to pm me with your name . Nice to be in touch on there!. Just a thought!.X

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Good idea why not indeed, I’ve pm’d you 😘x

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Hello Diane

Oh my goodness, what a tough time you are having??? They say things happen in threes?? Let's hope that's it for you.

How are you feeling now?

Like you said, the rest with the ankle is good for your hip, but even so. How's your BP etc now? And are you feeling any better? I really hope so.

I bought a little hand held Dyson this summer. My husband thought it was extravagant as we have a good hoover already. But I find carrying the heavy thing up stairs quite a nightmare. So I went ahead and bought the smaller one. It was been fantastic! I use it a lot, especially the stairs. And the children will do bits with it too, including the car interior. For them, it's much more fun that "normal" hoovering. So, go for it! No more big hoover on the stairs for you, please!

I haven't been to my GP re a steroid injeciton for my hip yet. It doesn't feel toooo bad. I am aware of it but it isn't excrutiating at the mo. I think when I posted about it before, I picked up that some people find that the relief they get with the jabs diminishes if they have too many??? So trying to keep a level head about it - not wanting to go too soon or too late, like last time. Do you think it's a condition, that once you get, it never really goes?

I think I am improving. But it's so hard to get enough time to rest at the mo. I don't even work. My lovely GP told me on Monday to factor 1 or 2 days off a week, to stay at home, do little etc, even when I feel well. But things crop up and it hasn't worked that way these last couple of weeks. Today I went to my daughter's school for a Rocket Science workshop, which she loved - me being there in the classroom with her and the science. So that was a lovely, enjoyable afternoon, but really I like a nap before 3pm. Oh well....

Please take care. Sending you a big hug.

Wendy xx

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Hi Wendy, you’ll be pleased to know I’ve just ordered a gtech cordless with an added £20 off because it’s Black Friday, so no ma’am no more heavy hoover on the stairs for me....ever!

I’m pleased you’re feeling a bit better, let’s hope it continues and it was nice that you could spend the afternoon in your daughters class, you must’ve been tired after if you missed your nap but like you say sometimes it’s not always possible to take ‘days off’ especially when you have children, I was in my early forties when this all started but my children were teenagers and one at uni but I remember the struggle with fatigue and I was still running around with college drop offs and late night pick ups etc and I was working albeit part time, I know it would’ve been much harder if they had been younger, so I take my hat off to you🎩,

I feel a little better today, my bp is stable and since cutting down my bp tabs the banging fast heart has calmed down so I think I was on too high a dose!

My children have clubbed together and hired me some new wheels for a month, one of the paramedics suggested it as I can rest my bad leg on a seat while scooting with the other leg, it’s pretty neat and I can get around downstairs easier with it than the Zimmer, it even has a basket, drinks holder and thermos, Oow how I like to live on the edge😜!

I’m able to put a little bit of weight on my bad foot now which helps keeps me a little more balanced, fingers crossed if I can feel better in myself then I can become a bit more active.

Yes I think maybe once you have bursitis you might be prone to it coming back, this has been my experience anyway over the last 8 years, good idea to hang on for the injections until you really feel you need them, I think I’ve heard that before about them becoming less effective the more you have, I’ll ask the dr that does mine next time I get mine done.

Well I hope you have a decent weekend Wendy and take it easy when you can.

Big hugs🌺💐xxx

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Oh So hard to get the pacing right. Poor you hope you feel better soon. Will be interested how you do re cough re asthma. I have started on Ventolin and my breathing is improved plus that on going dry cough better espcially at night . Lou xx

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Thanks Lou. I have given a more detailed reply about asthma etc to kittykat above. I definitely want to try an inhaler. Some days I might only cough once, but others it's lots. Last Sunday it took me hours to get to sleep as I coughed and coughed!!! Horrible when you're tired. I had a busy day yesterday, my Support Group meeting in the morning and so left at 8.30am, I was home for an hour then before going back out with my daughter for a birthday party. We didn't get in until 9.15pm. I was so tired, I don't know how I drove home. I've been in bed resting today but need to get up and cook a roast. I'm frustrated! How are you doing today? Xx

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I am resting up as flaring and tired. Too many hospital appoinmnets at present. Still its my eye clinic at last, so fingers crossed. Take care, Lou xx

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Sorry to hear that. Yes, I don't think that is taken into account either is it. If we have a run of appointments, we can find that draining in it's self. They are stressful in their own way. PLEASE let me know how the eye clinic appointment goes. You take care. Wendy x

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Will do, Lou xx

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I started wearing varifocals when I was 42. They were for reading and with photochromic lenses. I can always find them......they are in front of my eyes. On the first day I went to Tesco and I thought that were selling bigger bottles of wine and I could read the labels again!!

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I bet you were disappointed when you realised that they weren't larger bottles! 😆 It is that kind of situation I am struggling with my reading. I can't read the laundry care labels on clothes or instructions or ingredients on food packaging and standing under a light or closer to a window. But reading normal sized print in a book is fine! Half the problem is accepting all of this! x

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I have SLE and also positive for the anti-Ro and anti-La antibodies seen in Sjogren's. Have you ever been tested for these? I have dryness all the time but it tends to get worse right before and during a lupus flare. Be sure to be extra vigilant with dental hygiene when you have dry mouth. When my dry mouth problems began I started getting dental caries and at the time I had no idea it was related to dry mouth.

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Hello. When diagnosed I had a positiuve ANA, ENA & Anti RO. But not positive LA. Dr K at London Bridge, has said in his letter from my appt in October that there is a possibility of underlying sjogrens. I have been thinking this myself recently. The dry itchy irritating eyes when tired - (all my life), increasingly dry mouth, the cough, tinnitus. I guess, as with SLE, it's a case of waiting and seeing how things work out. I use an electronic toothbrush and always use a mouth wash but have bought a fluoride one now. But next time I'm at the dentist I will be discussing this further. I am finding I am increasingly thirsty and drinking a lot. I have lots to learn. Thank you for replying. X

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Hi Wendy

I can recommend Biotene toothpaste for dry mouth. It's got fluoride in it and is also an anti bacterial and it has brought me back some saliva which is important for dental health. It's expensive but worth it I feel. You can buy it in Boots. Good idea of yours to ask your dentist about Sjogren's!. I hope your not developing it and you feel better soon. X

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Thanks for the tip.

Do you know, I am not sure which way this will go. My original blood tests back in October 2013 were ANA positive, ENA & Anti-RO positive. But not positive for LA.

The Rheumy I first saw told me that was SCLE.

But here I am 4 years later with SLE, mild Ryanauds and possible underlying Sjogrens and I'm not sure about it all.

That's the nature of it all I guess.

But I am doing my eye drops and using my Ventolin inhaler, so I just have to wait and see.

I do feel so lucky to have found you all though and have this support and advice.

Wendy xx

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Do hope the inhaler and drops help Wendy. It's tough having something else to cope with like Sjogren's. You'd think we had enough really with SLE and Raynauds without adding these other immune conditions. Keep us posted. X

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Hi Wendy, I replied to your query eye mask, above.

Seeing this, about your dry mouth for sometime, symptoms, I can't help wonder in, if indeed, sjogrens was an additional factor, at your last dental appointment.

I have had a lot of work done, pre sjogrens, officially diagnosed, had bone graft, to accommodate 3 implants. Dentist removed 3 teeth due to perceived overcrowding, when I was 10 yrs young. Shocking, I know, that's what they did, back in the day. I had no flare ups or debilitating effects, well, other than being a traumatized child, over the procedure!

My daughter had overcrowded teeth, I would not let them remove hers. She has the most beautiful straight and healthy teeth. God blessed my decision.

Anyway, sorry I digress, just wanted to say, I had no problems having dental work until 2 years ago. For me, it seems more than a coincidence, Nowadays, I have to rest for 24 hrs, I feel so unwell, after a mere filling, or clean. The lights you describe really seem to attack my system.

Sjogrens poor, to none, saliva, really doesn't help with recovery, I'm sure.

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Oh Wendy

Life is tough with these illnesses!. Sorry you've hit a flare and hope your better soon!. It's hard paying a price for doing things that others take for granted!. As you rightly say we just crave normality!. Good luck seeing your GP on Monday. I'm sure she'll love your London Rheumy appt outcome. Hope the drops help. Lots of TLC, you've earned it!. X

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Hello lovely

My GP was so great, as always. Dr K had thanked and I did again, face to face. Who knows where I'd be without her and Dr K working together, despite the miles. She said she was happy to do whatever she could to help me, as I seem to have fallen between 2 stools. She put Mepacrine, Ventolin inhalers and the Hylo Forte eye drops on my repeat prescription, no questions asked. So another game of wait and see. I am off to order the eye mask.

How are you?

Wendy x

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