"You will get better, you have no alternative"

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"You will get better, you have no alternative"

Postby Ldyalb » Fri Nov 11, 2011 12:50 pm

So I saw my Rheumy for the fourth and final time yesterday.

I travelled all the way down to London, only to find my Rheumy wasn't there, I had to see a lady I've never seen before.

On the plus side;

- she did listen to my symptoms and was sympathetic

- she finally diagnosed me with Restless Legs Syndrome, had it since I was 4 so it's only taken 19 years!

- she's prescribed me fluoxetine, she said this may help my legs and the swelling in my fingers and hands - she said it will work well with the amitriptyline

- she's ordered more bloods (iron, thyroid, vitamin D, inflammatory markers etc) to see if she can sort out why my finger joints are swelling in the morning

- she's going to write to my GP and insist he refers me to a 'Fibro Clinic' - apparently this will give me 'Fibro rehab' - physio, hydro and a psychological assessment (I was a bit 'hmm' at this however I am seeing a mental health nurse tomorrow to assess me for counselling to cope with the changes in my life since I've been ill so I think that's why she kept highlighting the psychological help)

On the negative side;

- why on earth haven't I been sent to a fibro clinic already!? she said there's an excellent one in London near Charing Cross Hospital (which is where I was seeing the Rheumy)

- she insisted checking my iron levels as soon as she found out I was a Veggie (I don't mind having them checked, it's been 6 months so at least if I'm getting my diet wrong I can find out and sort it, I just didn't appreciate her look of sheer horror)

- she would not stop listing types of fish I might enjoy, suggesting I take cod liver oil supplements etc and this was after I told her I don't eat meat!! I switched some of my meds because they contained gelatine, I think that highlights I'm serious about my Vegetarianism! If my GP thinks I need more omega oils I'll find a plant source for them.

- she looked like she was going to faint when I told her I don't eat eggs (they make me feel really sick, I can eat products with traces of egg (aka :cake: ), but if I eat an omelette I get awful stomach pains and nausea)

- she said that everyone in the UK should take Vitamin D daily, even if their levels are normal as the UK doesn't produce enough sunshine to provide adequate Vitamin D (pretty sure this is :swear1: else we'd all be told to take it, she was Spanish I think so the weather must seem worse to her than it does to us)

And then the cracker.

I asked her about prognosis. She said it's always hard to know as fibro can be very unpredictable and varies a lot between people. But she did say;

"You must believe that you will get better. Because you will... you have no alternative but to get better"

:shock: :shock: :shock: :shock:

Actually I DO have an alternative to getting better. It's not a nice alternative but there's only so much I can do to try and make myself better, ultimately it's down to the fibro whether or not I improve in the future.

That's like saying to a patient with a terminal illness 'you must believe'. It isn't going to make them better.

I do appreciate the value of staying positive, in fact my family have said they've been impressed by how hard I work to stay as chirpy as possible, however there's only so much it can do. And when the pain makes you want to cry, and you're getting worse, not better, you have to consider the fact that you have a long-term chronic illness and it's a case of trying your best to tame it, and live with it, rather than defeating it with a massive stick and sending it on it's way.

If believing in something hard enough worked I wouldn't have any of my medical conditions, I'd be very wealthy and I'd also be Mrs Colin Morgan (the lad who plays Merlin in the BBC series). A girl can only dream :tongueout: :fingerscrossed:

I'm hopefully seeing my GP on Monday to sort out the bloods, going to ask him to check for Rheumatoid Factor again whilst they're taking my blood. My fingers are very swollen in the morning but de-swell after my morning diclofenac, I also take it at lunch and tea time so I think the swelling occurs in the morning when I haven't taken it for 12 hours or so. My rings don't fit in the morning, I've been getting it for a while but the last month it's been pretty much every day, rather than 3-4 days several times a month. The Rheumy said I need an ultrasound in a month if it doesn't improve (had one last October and they were fine but they are getting worse and everyone in my family has arthritis, Mum's had it since her 20s so I'm concerned that, plus the fact Hypermobility increases the risk of arthritis, means I may be at risk.

Now I think I need a :wine: and some [chocolate] ! :crazy:
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: "You will get better, you have no alternative"

Postby FluppyPuffy » Fri Nov 11, 2011 1:21 pm

Doesn't quite sound like it was quite as positive as your other appts. At least you now know what name to call the leg problem, yet another thing to add to your ever growing list :facepalm: :facepalm:

Hopefully that's it for a while now for you :fingerscrossed: :fingerscrossed:
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Re: "You will get better, you have no alternative"

Postby sky 1 » Sun Nov 13, 2011 8:03 pm

Thanks for your post i did not know there was a Fibro clinic so i shall ask my doc if i can see one when i go back in two weeks time thanks again for the imfo :idea: :D
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