PMRGCAuk

Here I am again looking for reassurance

I was diagnosed in March and started on 15 mg of Pred..things got better and I did a very exhausting tour of India which went really well. I tapered fairly successfully to 10 mg , but after decreasing to 9 began to feel absolutely horrible so advised to go back up to ten .As mentioned in previous posts I do not have excessive pain, but am getting more and more concerned about extreme weakness and now dizziness.. localGP has refused to do a CT scan of my head as advised by Consultant as he reckons I have labyrinthitis ...a diagnosis made without even looking in my ears . I seem to be caught between the warring factions of private and NHS. All this made more stressful as my son gets married in 12 days ..I am a widow facing an emotional situation , and am beginning to wonder with the way I feel today (Lying about on my bed ) whether I will manage to get to the event which hss been planned for a year .

Tiny- tim

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Hi, I'm sorry to hear of your worries. I'm assuming your blood pressure is ok and you are not dehydrated? I think the trick is to take one day at a time, make sure you rest, and don't forget to enjoy this big occasion. I'm sure you have a friend or family member you can lean on when needed. Maybe treat yourself to a massage or a Bowen appointment? I'm sure others will be along who will know more what to do. Hang in there

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Thank you...yes I am lucky with family and friends , and yes a nice soothing aromatherapy massage beckons !

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When I returned from Africa and experienced flu like symptoms I was whisked off to hospital and put in an isolation ward, they thought it was Dengi Fever or something ( it wasn't). Just a thought, could you have picked up a bug in India?

If that's cleared, have you tried going up with Pred some more to get you through the wedding?

I will be corrected if I am wrong but what could they find with a CT scan of your head? I mean what is worrying you deep down?

Is the consultant private and wanting the NHS to fund the scan that he would advise for his or her private patients?

These things always seem to crop up when there is some non negotiable obligation you must fulfill, don't they?

My guess is, a bit more Pred. A glass of champagne on the day and the sheer joy of seeing your boy embark on married life will get you through the day.

I often feel exhausted and sometimes feel dizzy, add to that the anxiety of a big important social occasion, yep! I'd want to run for the hills!

Good luck, you'll be ok you know, you've been through bigger challenges. 💜

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Have you asked to see a different GP?

And try a bit more pred to see if it helps until after the wedding. Stress and PMR don't make good bedfellows at the best of times!

When my daughter got married at the worst time for me in PMR/other medical terms I found a comfortable seat and watched everyone else. I was there - which was all that really mattered.

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Thank you...it all helps to know others are going through similar things.I still have nearly two weeks to get sorted as far as possible.It is just such an incredibly difficult condition to manage and understand.I have always had boundless energy , enthusiasum and a positive view of life, so this is all new to me and it's taking time to adapt .

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Hang on to the positive view of life - PMR is still really a glass half full illness: it doesn't kill and there are far worse treatments than pred!

You managed your Indian trip - the wedding will be fine.

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Hello, I'm glad your trip was successful. Just a few additions to the melting pot.

Labyrinthitis can't be diagnosed by looking into the ear unless it is secondary to another problem such as ear infection or impacted ear wax. If it is a viral thing as it usually is, it is likely to be invisible. Generally labyrinthitis dizziness is like being on a boat at sea, made worse by moving of the head. If it is labyrinthitis, there is a medication that is helpful for the dizziness that your GP can prescribe. Without a definitive test, usually symptoms are all they have to go on.

Depending on when it started in relation to your travel and if you have other symptoms like intestinal, rash or new sweats/fevers, your GP ought to think about a possible travel related infection.

With the extreme weakness as well, is it possible your adrenals are not waking up enough at this lower dose to cover all this stress?

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Hi,

I had labyrinthitis many years ago, nothing to do with Pred, and it can be really horrible feeling. Had to lay in bed for a couple of days, just moving head made me feel incredibly nauseous, so I feel sorry for you. Dr doesn't need to look at ears - it's a balance thing, but sometimes is started from an infection of some sort. Took me about 6 months to feel okay, but occasionally get a slight twinge even 15 years on. Southampton University are doing a lot of work on labyrinthitis and Meuniers Disease and dizziness in general. They have some exercises on line which may help. See "balance.lifeguidehealth.org"or type Southampton University Dizziness Study into browser.

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My late mother had treatment several years ago. they shift your head into several position to shift gunk crystals about. She had to sleep in a chair for a night or too but having had the vertigo etc and being bed bound when attack on for years it totally went

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Hi Tiny_Tim. Obviously you need to work with GP to identify cause of dizziness and weakness. I can't help with that but perhaps I can help with management of the other stuff including dizziness (since I suffer with positional vertigo), and have also recently been in the position of wondering how on earth I would manage to travel to my Niece's wedding (one and a half hour drive) , let alone help my sister set up the hall and have the energy to attend the wedding and celebrations afterwards, given at the time I could hardly move (pre diagnosis of PMR). I could not consider bailing out as the bride's Grandmother, my lovely Mum, had recently died and my niece was very, very close to her and to top it all my sister's husband decided to end their relationship one month before the wedding! So my sister and niece needed me badly, were relying on me in fact emotionally and physically, as I am very much the 'fixer' and 'doer' in the family.

As the hotel was an hour and half away I decided to book an extra night at the hotel so that I travelled the day before and day after the wedding. This all happened pre diagnosis, pre pred so no pain relief other than paracetamol / ibuprofen alternated every two hours.Due to length of drive I planned a stop at service station to relieve leg stiffness mid way through journey. What I had not planned was locking my keys in the car along with all my belongings including my handbag! It was an extremely hot day and a knight in shining armour ( a caring stranger who Just happened to be parked next me bless him!) remained with me for three hours until the AA arrived, plying me with bottles of water so that I didn't dehydrate. Yes there are still 'Knights' even in this day and age!

On arrival at the hotel (some five hours later) I told everyone I was going to rest, taking back control, despite the rest of the 'early birds' from the wedding party trying to persuade me to join them. The pain in my thighs was unbearable by this time, so I listened to my head and prioritised my needs, knowing that the following day I would be prioritising the needs of others. Meanwhile they could have a good time without me.

Up early the next day, armed with my Mum's pretty walking stick, (I had never used it before, but packed it just in case) I went to assist dressing the wedding reception venue. My sister was so glad of my support, even though physically I was not able to bend. I am good at delegating and giving out the orders. The early bird guests from the previous evening jumped in to help so that the venue was dressed beautifully.

I didn't want to use the walking stick at the wedding ceremony, so I asked my boys to remain by my side to assist me with standing and walking when I needed them to. I felt very loved and cared for and was proud that my boys were there to help. At the reception and after party I stood, walked or sat as the need arose and, despite some discomfort, managed to enjoy and last the day out. Boy did I appreciate my bed that night!!!!

Whilst I did not have vertigo at the time of the wedding I have developed coping strategies to cope with the dizziness.

So having shared my scenario here are my tips of the day.

Tips of the day.......

1. Firstly if there is onset of dizziness try this self- management strategy. Close your eyes and stand very still (or lie still if in bed) with eyes closed until dizziness goes. Open eyes very slowly, whilst keeping head extremely still for a few seconds. Once balance is secure from the torso Move your upper body keeping head, neck, shoulders in line slowly to the right, keeping your eyes open. Then do the same looking to the left. It is important for the whole torso to move rather than head or neck as any sharp head movement of the head or neck will bring the dizziness feeling back. Although this seems long winded in practice it takes just seconds, enabling you to regain control.

2. Consider taking a pretty walking stick ( to match your outfit) to give you greater confidence should you experience a dizzy spell.

3. If sickness occurs during dizzy spells, as a short term management strategy, visit GP beforehand to get anti sickness tablets to help you through your important day.

3. Arrange for someone's arm to be at hand in case you need it.

4. If the venue is more than an hours drive consider staying at hotel and travelling down the day before.

5. Recruit willing helpers and delegate what you do not need to do to others.

6. Sit, stand, walk, lie down as and when you need to, taking full advantage to rest, or do your own thing to relieve any discomfort, during pregnant pauses in proceedings.

7. Let people know the strategies you have in place so that they know their role in supporting you and that they don't have to worry about you as you have it sorted.

8. Rest for at least two days beforehand and keep diary free for two days after as well to collapse in a heap afterwards.

I know that stress can exasperate PMR symptoms. I also know that I feel less stressed when I am in control, hence the suggested planned strategies that may help eleviate the stress. Here's hoping you have wonderful time. Enjoy!

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Thank you so much ...It all makes such sense , but we all keep needing reassurance from time to time .Had a really bad day yesterday with weakness and dizziness , but took a rest in the afternoon which made such a difference .I do tend to feel better in the evening . Wondering whether taking Pred at a different time might help ?

Tiny - tim

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Have you tried taking it at night? One lady had wobbly symptoms a few hours after taking her pred so her GP suggested trying taking it before bed - problem solved, no more wobbles!

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Marilyn, that really is a most comprehensive, well thought out and brilliant reply. I think we probably all want you organising our life for us. I have great respect and admiration for logical and knowledgeable thinkers. I wish you lived next door to me.

I very much enjoyed your post

Enormous good wishes to you

Judy

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Judyliz

Have you read Marilyn's profile and her recent posts about 'Honouring a Work Commitment'? If so, you'll see why she's so able to help!

Good wishes to all, especially Tiny_Tim for the wedding day and beyond.

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Hi Judy. Thanks, just hope suggestions help Tiiny_Tim enjoy her special occasion.

Interestly, I usually act on a whim, go with my gut and with the flow strangely enough. This attitude prevailed both in personal and professional life. However this 'laid back' persona and approach to life was of course before my body went into complete meltdown, at which time I was honestly hit by new feelings of fear and disbelief until I was diagnosed. So this 'extra planning' is all a bit new to me really. I guess the aim of forward planning for major events is my way of giving this PMR thing the middle finger and letting it know that, whilst I accept that I may need to make adjustments for a while (default persona) it will not 'control' me, nor will it determine who I am. (Newly adopted Warrior persona) Xx

P'S Persona adaptability may be to do with the Gemini starsign????

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