Entry 12 was written a week after going up to 24mg of methyl prednisolone. It left me feeling much improved in mood and energy levels, and optimistic that we had found a solution to my 3 year history of increasing fatigue, incapacity and daily flushes and shaking. Perhaps, I thought, those symptoms were mainly a simple reflection of my adrenal insufficiency?
Not so fast! A day or two after writing that post, I woke with the familiar trembling and weakness. Since then, it's been rapidly downhill.
The good news is that nausea I used to experience every day seems to have gone (except on waking, when 10mg hydrocortisone seems to resolve it). My CK levels are also back to near-normal. However, the decline in effort capacity continues. A 'good day' counts as one when I can potter around the house without discomfort. But even preparing a cooked meal is beyond me, and a shuffle up the road to the post box - some 50 yards away, is a major expedition.
I've had some excitement with azathioprine too, resulting in two spells in hospital, and a third of overnight vomiting at home. So that's one to cross off the list of potential remedies. Again, there is a plus side - the admission, and rapid re-admission - prompted an emergency referral for a home OT assessment. Within a week, a man came to fit a second stair-rail and I now eagerly await a bath hoist and walking stick!
But treatment-wise, it's back to the drawing board, having had another reminder not to get too smart.
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whisperit
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Always sounds so bleak when we put this stuff in writing doesn’t it Mike?
A friend of ours is 82 and flu took him and his younger wife into hospital recently. He’s now being visited at home regularly by physio and they have hired a cleaner and a gardener but are otherwise in complete denial about the extent of his disability. We visited a few days ago and he was complaining bitterly about loss of sensation (hot or cold) down his right side. His wife is blaming his cheap statin. He is fed up with using his zimmer and so on.
I admit I came away feeling somewhat exasperated by them both because, given he is 82 and she doesn’t need to work - their quality of life seems pretty good to me. But I know this isn’t fair of me at all because it’s always relative. 82 is ten years longer than either of my parents managed to survive and he does have a lovely home, garden and wife so the enforced confinement seems relatively nice. But to them it seems absolutely dire so I suppose this is what counts.
But then I’m 55 and have lots of things to be thankful for too - don’t yet need a stair rail and can go out now with husband and dogs.
So to me your situation sounds pretty lousy and I really hope hope hope they offer you that does magically turn your life around. There are many more treatments for you to try I am sure.
But alternatively medical cannabis or a very good type of CBD oil has turned an online friend’s life around recently. I will copy his post for you by PM.
I’m in Atul Gawande Being Mortal frame of mind just now. All things that improve our quality of life in the here and now are well worth considering - and so far conventional drugs haven’t done much to improve mine. I’m currently staggering around feeling vaguely off my trolly on Pregabalin. It’s working a bit for pain - but as GP once said “pain seems to mask the numbness for you”. And I won’t get started on the vibrating and trembling.
Have you considered Parkinsonism as a contender? I read an article about movement disorders with rheumatic diseases the other day - it felt relevant X
in reply to
PS wish I lived near you. I’d cook hot dinners for you if you could hold my legs still! X
You're right about the hard reality of putting into words what has been happening. I think for the first 2-3 years after diagnosis, I hung onto the notion that this was all temporary and - even if it meant long term medication - I would sooner or later return to something closely resembling my 'before' life. This year, I had been coming to terms with the more realistic scenario that things will be very much more limited. My new life is a world where I have to learn about bath hoists and blue badges and learn to take all my pleasure in the view from my window rather than from a mountain top. Diagnostically, and treatment-wise, my priority is to seek further endo opinions, from someone who is willing to put time into thinking about my situation rather than the 'quick scan of the notes 5 minutes before a review ' that my current endo seems to think is adequate. I'll look out for the CBD oil info, thanks, but I don't see Parkinson's as a likely candidate x
Parkinsonism not Parkinson’s Disease is what I meant Mike. But I admit I haven’t really researched endocrine diseases as possible cause for my trembles and weakness, disequilibrium yet. I’m sure you know more about this with your clinical background but just in case it’s of interest here are two links showing what I mean:
“Some diseases like ALS or Parkinson can occur in a person with a rheumatic disorder, but not be at all related to the rheumatic disorder, instead occurring as they would in people without rheumatic diseases, while some rheumatic disorders–for example, Sjögren Syndrome, vasculitis, and systemic lupus erythematosus–actually cause movement disorders,” explains Dr Matteson. “It is important to recognize this, because successful treatment of the movement disorder is predicated on successful treatment of the rheumatic disease,” he says.”
So sorry Whisperit to read of your health struggles still. If only there was a solution to your trembling and weakness episodes!. Your near and yet so far as glad the daily nausea has been helped by the hydrocortisone!. So sorry about the Aza. It can be a difficult drug to tolerate. I had problems with it. Maybe MMF would be better and it seems better tolerated?. I don't know how your keeping your spirits going with being so curtailed in what you can do!. I guess you await the delivery of the bath hoist and walking stick!. Some guys have all the luck eh?. Ha!. I'm really sorry and just hope you get more improvements soon. X
Thanks misty. Yeah, this morning, I topped up the bird feeders outside the window and warmed some porridge - it took about 15 minutes altogether. After that, it was 2 hours before I could even get out of my armchair without uncontrollable shaking and flushing. Every day, I am incredulous and outraged that my body just will not allow me to do such trivial things as to empty the dishwasher without protesting so hard. So I understand why clinicians still seem to have a hard time believing just how disabled I have become. Whether another DMARD will help is a moot point atm. Again, it seems likely that it will be a case of 'try this and see what happens' rather than a trial based on an understanding of what is going on. But then, that might be true for many of us....x
There has to be an answer for those symptoms Whisperit it's a case of finding it!. I've been treated empirically over the years too with the right consultants who are willing to do this!.
Could I ask you how were you diagnosed with Addison's as I may be going down same road?. My new GP has spotted that my blood sugar level is very low.Had no idea!. I've researched it and found I get 10/17 symptoms and he said he'd do a fasting blood test and there was also another one he'd get special funding for!. Reading up about low blood sugar being unusual in non/ diabetics has led me to a possible cause of Addison's. Only cause really that could fit for me. It fits with my Gastro probs recently and interesting your nausea has gone with the hydrocortisone!. I do realise a lot of our symptoms can overlap in other conditions but did you have your blood sugar tested?.
I have a walking stick too, you will get used to it given time. It is hard to come to terms with. A dark colour is best and foldable as it won't show so much. Take careX
I suspected low cortisol because I felt so lousy on waking each morning - nausea, headache, trembling and *extreme* tiredness i.e. even raising my head was an effort. I tested my blood glucose at this time - usually 3-4 - on the low side, but fine later in the day. I've tested it at intervals since and generally find a similar pattern. Anyway, rheumy assured me that I couldn't have adrenal insufficiency because I hadn't been on steroids for long enough, and that a random afternoon cortisol blood had showed a 'normal' level. I looked into this and, of course, the 'normal' range of cortisol in the afternoon is so wide that only a very extreme result would flag up as 'abnormal' . What you need are early morning or even night time levels (when you should be peaking). So I sent off for a home saliva test kit, taking samples at 6 points during the day. The result showed almost zero levels on waking. This persuaded my rheumy to refer me for a synacthen test, which showed a poor response, so I am officially classed as 'adrenal insufficient' (although another medic recently classed it as 'Addisons') . So far, this is as far as I've got, but if you want a full assessment of adrenal function, you need further tests (such as a cortisol 'day curve'). Hope that makes sense. x
Thank you Whisperit for your very helpful reply. Oh my goodness don't we have to be our own health detectives, battling through but look what you achieved by getting your Rheumy to take note!. I think mine is mild if I do have it but I too have the morning headache and have taken steroids for a long time!. Your symptoms were really acute, you'd think the tests would reflect that better!. Sounds familiar doesn't it?.
I've just looked up Wikipeadia on adrenal insufficiency and it says there are three main types of it.
Firstly there's primary impairment of adrenal glands with 80% being due to AID Addisons or Auto- immune adrenal itis
Another type is idiopathic no known cause and others due to congenital adrenal hyperplasia or an adrenal tumour. I won't write it all as I'm sure you know this already. Several little birds have told me you've done a lot of research!. I just hope some answers to your awful symptoms can be found soon. X
Yes, the more one goes into it, the murkier it gets! After being assured I couldn't have adrenal suppression, and it is 'fibromyalgia', a bit of basic investigation by me results in a 'secondary AI' diagnosis, and after further questioning, at my last review, rheumy conceded that I might also have some primary adrenal damage. So yeah, if something doesn't feel right, we have to be our own advocates and researchers. x
Bummer whisperit. I can't help on the possible meanings of the symptoms side, but can understand the mental/emotional side. All my symptoms started 5 yrs ago ( I think I said I could date them by Prince George's age). I constantly think "next winter I'll ...." followed by "well, next summer I'll ...". It doesn't happen. On a very bad day I wonder if I'll hang on til the usual 90+yrs my family tends to live. Only 30 more years of this fun.
The last few months of my potassium levels hanging around at the lowest they can be, then dropping, followed by panicking GPs saying "You're not safe in the community" in spite of me not being an axe murderer, and visits to A&E in case my heart is going to play ker-plunk have left me just sometimes thinking, well let it.
PM to follow on ways I sometimes pass the hours that are not rude but I'm not admitting here!
Have you applied for/got PIP? Methinks even Atos and DWP could not be so cruel.
I just applied for an extension for the PIP application as I am finding it impossible to find anything written by my clinicians that supports my case properly - just a series of notes to each other saying 'I have referred him to X' or a list of test results. Nothing that substantiates the functional impairment I claim. So I need a bit more time to work out how best to present that.
It's a difficult balance posting here about hope/fear/optimism/pessimism isn't it? Everyone needs to have some goals and to feel supported and encouraged, yet there is also the reality that many of us experience a pretty relentless struggle. Think about posting an update for us with the latest on your K (erplunk) levels etc - it's sure to be of value x
Thanks whisperit for your help. Am going to start the process on 21st with a GP appt. Do hope diagnosis is strighttforward for me as so much hasn't been and you have to be up for the fight don't you?. Doubly hard when we feel so rubbish to start with!.
I saw your reply about Pip to lupiknits and I'd just like to say I didn't have evidence from Consultants that corresponded with my health battles. I got DLA because of my list of drugs, different health conditions and what I'd written on the form as to daily life and remember you say your worst days. Also just listing number of Consultants and who they were must have helped. I didn't need to go for an assessment either.
Hope that's helpful and I'm sure you will be successful. Keep us posted and GOOD LUCK X
I have only minimal residual lung scarring, thank goodness. But the business of gathering relevant reports and notes together from my scattered records has been a long-standing headache. I've finally just requested a full copy of my clinical notes from the Health Board, so I hope that will help eventually x
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