Sticky Blood-Hughes Syndrome Support

a dilemma

I lIve In Surrey and my elderly parents live in Glasgow. My mother has alzheimers and a myriad of other conditions and is in hospital with a broken elbow and query abdominal bleed, so things don't sound too good. My sisters live in Edinburgh and have been going backwards and forwards since Thursday and my brother has gone up from Derby today.

I don't know whether to try and fly up or not - my husband says he will come with me but he won't be able to go for a day or two as he has a rotten cold and I don't have the energy or confidence to go alone. I'm also worried that it will trigger off my fibromyalgia again as I feel that it could flare up at any moment, especially as I can't take a high enough dose of amitriptyline to really help and I am totally hungover from the duloxetine I tried last night; no more of that one either as it is in capsule form and can't be halved.

Realistically I don't think I can get there and know that there is chance I will have to sooner rather than later if she doesn't pull through and that's the time I will need to use up what energy I have. Trouble is the age old problem that not all my relatives realise how unwell I am most of the time.

I'm going to speak to a GP later to see what he thinks but any thoughts would be welcomed.


5 Replies

Hello, this does sound awful, and of course the stress of the situation will make you feel worse. I am not an expert on the drugs you are on, only being on apsrin and co-codimal for my five conditions.... however taking the over view, on a positive note, it is short flight, done this one myself from Heathrow. My only advice would be, to travel very light, and to make sure you allow enough time to arrive at airport early, in order to slowly book in and then have a rest, sort of think of it in stages. Regarding the pull of ill relatives... not that long ago, my mother was in a hospice for 7 years, either I or the children would be too ill to travel, and that in itself was more emotionally draining than the actual journey. Try to get a flight at a reasonable time, so you can relax and pack the day before, and then sort of wend your way to things, rather than a full on dash. Feel for you, and hope things improve as much as they can with a situation like this.

Mary F x


Your sisters are already in Edinburgh and your brother has already gone to see her, so it is not abut giving your mother any practical support.

You write

"Realistically I don't think I can get there and know that there is chance I will have to sooner rather than later if she doesn't pull through and that's the time I will need to use up what energy I have. Trouble is the age old problem that not all my relatives realise how unwell I am most of the time. "

So I think you already decided.

What about guilt, how much of this is about feeling guilty?

Have you phoned the ward where your mother is in hospital to ask about her condition and ask them to tell her you called?

This would be a good idea and they can say if your mother seems near death or not.

It sounds like you really don't want to go, bear in mind it is entirely your decision, even whether you ever go back at all is still up to you.

But ask yourself how you will feel if you never see your mother alive again. Its entirely up to you because only you know how you feel.

If you do go, I think you could find someone to see you off on the plane and get a family member to meet you at the other end? The flight would only be about an hour and a half. Is it about not wanting o travel or not wanting to get involved with the family drama?


Hello Caroline

Being someone who also suffers from FM as well as APS (as well as other conditions) I know only too well how you must be feeling and the stress of all of this is not going to help matters. I too live near you so perhaps our paths have crossed on the FM front.

This is a really difficult one but I would do a mixture of what has been advised based on your condition, how thats likely to affect you and the situation as a whole.

First of all call the Hospital as has already been suggested and find out just how grave or not things are.

Then you have to decide if it is as bad as you fear if you should go. Bear in mind that under really stressful situations your Fibro could, probably will flare, but may not do so until after things have taken place. The body has a wonderful capacity to keep going whilst it has to. However you also want to make sure that you are at home or with your husband if it does.

So if you can wait those couple of days until he can accompany you then that would be the best option. Also if there is anyway you can drive then you could do it together in a slightly slower way so you can break the journey as often as you feel is necessary to get out and stretch. You can also take with you all those things that make you comfortable both for the journey and the place that you stay which will help to minimise the flare.

Make sure to take some extra pain meds to help you through.

Duloxetine will take you awhile to get used to so now is not the time to try a switch from Amitriptyline. I would suggest Tramadol to get you through any flares.

If you do decide that you cannot go or you flare and are not well enough to make the journey then you must not beat yourself up about it. You must remember that your mum had the rest of the family there and perhaps will not have known who was and was not present. There is no point in making yourself really ill doing the journey just to make a point to your relatives who won't "get it" anyway!!!

I do hope things work out and in whichever way YOU decide, also that your body co-operates. When you get back or when you are ready, PM me.


Thanks everyone. Mum picked up again after a blood transfusion and there is no internal bleeding, so no immediate danger.My parents are retired doctors so my dad has a clear idea of what's going on and my sister is a social worker so great at the practicalities. So have decided to play the waiting game as I am really not well at the moment. But it is stressful and difficult to put out of my mind. My husband has booked a long weekend towards the end of January so the object is to go then, depending on the weather. It is also helpful to have a friend whose elderly dad lives in Scotland so she understands what it's like.

In the meantime I'm back on the Amitriptyline but 5mg and I spoke to another GP yesterday who has prescribed the lowest dose of Duloxetine which I then have on hand to try once things have settled a bit. Can't take anything with codeine or opiate so take Ibuprofen although I shouldn't with the warfarin, but even paracetamol can make feel sick!

Now got to call the INR clinic as my inr has gone from 4.4 to 2.5 in the space of a week. Probably partly why I've been feeling dreadful the last couple of days - splitting headache today.



Hi Caroline

I know you have the Duloxetine to try when you are ready but I can't help thinking you would be a prime candidate for Pregabalin. It would help a lot with pain and sleep and the real beauty with it is that you can start on a really low dose of 25 mg at night which is highly unlikely to give any side effects at all and then you can increase by 25 mg as you feel ready. You can do this whilst still on the Amitriptyline and then slowly reduce that when the Pregabalin has got up to a decent dose. You may not need to take the Duloxetine then.

I also believe that pregabalin is safe with warfarin.

It is one of the other FDA approved drugs for FM in the USA and is better suited to those who are sensitive to medicines because of the ability to take a low dose and titrate up slowly. It may be worth a try whilst you wait to go up to Scotland at the end of the month.

I am so pleased that your mother has improved it will help you no end having that pressure taken from you.


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