Newly diagnosed today

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Newly diagnosed today

Postby Princess mango » Tue Dec 17, 2013 10:23 pm

I went to see the rhemetologist today and was diagnosed with Fibro, I was given a leaflet told that he would write to my GP and to stop taking hydroxychloroquine, carry on with the amitriptolen and that I was signed off from his department. That was that. Question where do I go now back to my Gp for treatment? I feel like I have just been passed on I thought I would be happy with a diagnosis but I feel just like a lump of meat being passed to where? It's just before Xmas I know his letter is not likely to reach my Gp before the new year, what happens with coming off the hydroxy so quickly ? I'm very confused with no one to talk too, my hubby is very good but just dosnt understand anything about this horrible illness. Anyone got any advise? Thanks for listening.
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Re: Newly diagnosed today

Postby Garyl » Tue Dec 17, 2013 10:54 pm

I was signed off 7 years ago from rheumotology dept, i just have to keep taking pain relief and other meds. Am really suffering today hands are so bad nothing else can be done to help me is a hard thing to deal with , hope you can get help and don't suffer like i have been.
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Re: Newly diagnosed today

Postby Princess mango » Tue Dec 17, 2013 11:13 pm

I just don't know what to do, I'm a gardener and am not working very much the nurse today suggested that I change my job.. Whose going to employ me with this. I thought knowing what I'd got everything would sort its self out, obviously not. Will make an appointment with my Gp to see where I go next...if there is anywhere, sorry I'm rambling I think I'm in shock. Thanks for answering Garyl my hands are bad today too. Hope you feel a little better soon.
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Re: Newly diagnosed today

Postby FluppyPuffy » Tue Dec 17, 2013 11:27 pm

Just a quickie as I'm a bit low on battery power, both the phone and me. Don't just stop taking the med the rheumy said you need to come off as there could be unpleasant side effects which might leave you feeling even worse. You really need to talk to your GP about how best to come off them. There are other Meds that can be.used in managing FM.

Battery flashing empty, so will come back to you with some linkys to look at and anything else that might be helpful.

Things do get a little lighter and brighter as things start to sink in and make a little more sense, so try and keep bobbling along. Anything that you're wondering about, just ask and we'll do our best to try to help you with it.

When all else fails, hug your Teddy xx
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Re: Newly diagnosed today

Postby katieloury » Wed Dec 18, 2013 1:37 am

I too am newly diagnosed...
I would recommend waiting till you know your gp gas the report before seeing them.
I know mine wouldnt start or stop anything till they have all the info..annoyinf I know.
It does get easier. Ask to be referred to a pain specialist. Also where are you?
Hugs to you x x
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Re: Newly diagnosed today

Postby dotty lotty » Wed Dec 18, 2013 8:49 am

My rheumatology appointment was similar. He was more interested in other symptoms said he would to a lip biopsy for Sjogrens syndrome (not convinced he will).
I had to specifically mention my pain had a prod at the tender spots and said its fibro do you want a leaflet :scream-1: :scream-1: :scream-1: Glad I had been to the pain clinic first.
As for stopping hydroxychloroquine check the patient information leaflet to see if it mentions whether it says you have to stop it gradually or try for a quick telephone consultation with a GP at your surgery to see you through till everything returns to normal after new year. :teddy-bear:
Just had another thought try asking your pharmacist or check on the electronic compendium of medicines web page for more info (sorry to the moderators if I cant mention this)
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Re: Newly diagnosed today

Postby lala1980 » Wed Dec 18, 2013 12:52 pm

My to feels very odd....cos my gp diagnose me!!??? had all the bloods done a few weeks ago and she knows me quite well..with all of my problems...Ive not even seen a rheumatologist my gp said they would only send me back to her anyway and that we can managed my pain relief but if I feel I need extra help she can refer me to the pain clinic... and that was that??? Hope u get sorted xxxx
If you smile then the world is a better place :-)
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Re: Newly diagnosed today

Postby Zeberdi » Wed Dec 18, 2013 3:04 pm

Most hospitals are about finding what is wrong, if they can treat you and getting you through and out. They do not understand, no, they do not have the time to deal with the impact on a particular individual. They have a job to do, hopefully do it well, and pass you on to the 'right' or most appropriate person.

Can you imagine if they tried to deal with each patient fully - they have little time for cancer patients even when terminal - experience with my husband showed me that - BUT - I can't imagine the mental and emotional toll it would take to even try. A diagnosis to us is very personal and makes a huge difference to our lives. No department has the time, resources or ability to really tackle it.

I have felt that 'what the hell now', confusion and sheer fear of what will happen to my life and found little or no help. After all it won't kill you and they can't do that much because they don't really know the causes, the best treatment is trial and error and hospitals, surgery etc are full of people who are dealing with life threatening issues. It makes you feel very insignificant when your whole life is falling apart and no one seems to get it. In addition many family and friends see you look ok, even have 'normal' days and can make it very hard to live with - even coming up with really mental ways of dealing with it.

So, in reality this thing you have been diagnosed with is distilled into - you have this and you will have to live with it.

As with many things in life - it is what you make it. Depression, desperation, anger are all a part of this.

YOU CAN HELP YOURSELF.

All this is a very personal view over nearly 20 years, a very good job/career lost, a husband who died of cancer and many, many other challenges no one really needs to hear about. YOU CAN HELP YOURSELF.

I found out two years via my Doctor I had pernicious anaemia - a B12 deficiency caused by failing to absorb this vitamin. Low B vitamins are a major part of fibro. I have to have injections but if you can absorb B vitamins then take them. I REALLY know from my fibro when that injection is due.

I recently found a new drugs trial that is looking into Fibro as a viral infection and experimenting with a drugs trial to treat it. I read the premis (reasoning behind the theory) it made so much sense to me. The herpes simplex 1 virus is suspected and when I read it it was like reading my medical history.

So, I know alternatives made a huge difference to my husband when he was ill and I worked hard to keep him as well as I could for as long as I could. I had never fought so hard for anything in my life or learnt so much about the body. It has taken five years to get to the point where I care enough to do the same for myself.

I know stress is a trigger. I know over working myself is a trigger.I know massage helps. I know managing my pain levels is important as is managing my life to control the other trigger where I can. This is experience. Make notes, keep a diary and work out your own triggers, patterns and you will know better how to manage it.

Since reading the anti viral trial information I decided to look at alternatives that are used to treat the simplex 1 virus. Alternatives take time to work. They are gentle and are usually without side effects though I would ask everyone wanting to try these to check for themselves.

So since reading up on the simplex virus and alternative treatments here is what I found, just in case it might help.

Eat less refined sugar - viruses, bacteria and even cancer feed on sugar.

Drink more water - hydration and removing toxins will improve the bodies function and take away toxins caused by inflammation. It also increases oxygen in the blood - oxygen is poision to cancer, viruses and bacteria - they are anearobic ( 'breath' carbon di oxide and too much oxygen kills them.)

Supplements:

Vitamin C (ascorbic acid)
Vitamin E
Zinc
Lignin carbonate complex
Propolis
L-Arginine
Odourless garlic
Vitamin B complex
Iron

All of these are seen as anti viral, detoxifying and or anti inflammatory.

Checking they do not have adverse reaction to medication being taken is important but they are all supplements available from a health shop, over the counter and considered safe.

Avoiding caffeine and drinking green tea is also advised and my personal hardest is avoiding alcohol - sometimes it is the only sleep aid but that's just me.

We can not choose what happens to us, we can not choose not to have this and you would have to be super human not to struggle with this BUT - WE HAVE A CHOICE. They only choice we ever really have is how we react to anything. We can give in, hand it over our care to a professional who doesn't have to live with this, might have access to different information, drugs and support then say we have done all we can - OR - we can be an active part of our own life. We can choose to work for ourselves, support and pass on what we find and hopefully make a difference.

I wish I could have understood all of this when I was told what I had and that I had to live with it, I wish I had been more active and not looking for help/solution but working for myself. For those recently diagnosed I would hope to be able to offer a little of what I wish I had had.

I am a waffler - sorry. Hope it helps.x
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Re: Newly diagnosed today

Postby FluppyPuffy » Wed Dec 18, 2013 9:09 pm

dotty lotty wrote:Just had another thought try asking your pharmacist or check on the electronic compendium of medicines web page for more info (sorry to the moderators if I cant mention this)

No problems at all with mentioning this dotty, it's a very useful site to know about when looking for details/info about meds, esp as it has downloadable Patient Info Leaflets, which I've made use of a number of times.
lala1980 wrote:My to feels very odd....cos my gp diagnose me!!??? had all the bloods done a few weeks ago and she knows me quite well..with all of my problems...Ive not even seen a rheumatologist my gp said they would only send me back to her anyway and that we can managed my pain relief but if I feel I need extra help she can refer me to the pain clinic... and that was that??? Hope u get sorted xxxx

There are more GPs dxing FM due to being more aware of the condition, plus your GP can refer you for pretty much all the tests that a rheumy may send you for. And if you did see a rheumy, it is quite likely that they would discharge you back into the care of your GP once they gave you your dx, it has happened to a lot of us, and quite often rather abruptly and rudely. Given the choice of the rheumy who saw me when I was dx'd and my regular GP, I know which one I prefer to be in the care of.
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Re: Newly diagnosed today

Postby FluppyPuffy » Wed Dec 18, 2013 9:51 pm

Got a bit more power tonight, so :cow-wave: :cow-wave: and :welcome: to our little sanctuary Princess Mango :cow-wave: :cow-wave:

With you being discharged from the rheumy, it is your GP who will be responsible for your care now, so it is them that you need to see for advice about meds, treatments etc. Amitriptyline (the med the rheumy said to continue taking) is often one of the first things tried when trying to find what could help. It can help with sleep and pain issues, and for some can be pretty effective. There are also other types of meds used, and it's not unusual to have quite a cocktail of them build up over time. This Linky explains about some of them, and if you have a bit of a looky on the Treatments and Medications board, it might help give you an idea of what to ask your GP about.
Princess mango wrote:I feel like I have just been passed on I thought I would be happy with a diagnosis but I feel just like a lump of meat being passed to where?

Princess mango wrote:I thought knowing what I'd got everything would sort its self out, obviously not.

Feeling and thinking like this after you've been told you have FM is something that has happened to a good many of us. It's like the initial relief of having a name for what is affecting us is wiped out by the overwhelming enormity that it's not something that can be got rid of, and that it is going to be with you for the long haul. It takes a while to pass thru this phase, and it's something that can't be rushed, skipped, or a short cut taken, it needs to take as long as it needs. As you find your way thru it tho, things will start to feel a little less bleak, and gradually start to improve for you.

There are number of different things that we have each found to make things a little more comfortable and manageable during our journeys to find how to live with FM, and the Hints and Tips For Coping board is full of them, maybe having a look on there might be another thing to do, as there are quite a few self~help ideas to try out that may be of benefit to you.

I'm sure that was more I was going to add, but the delights of a foggy head have finally caught up with me (been trying to dodge it all day :facepalm: :facepalm: :facepalm: )
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Re: Newly diagnosed today

Postby Princess mango » Thu Dec 19, 2013 9:09 pm

Thank you all for your replies it's been a couple of days now since my diagnosis so what did I do, think I was superwoman again like I used to be.(denial). Out till late last night and gardening (work) today, hence unable to move since 2pm this afternoon with exhaustion and pain. I suppose I am learning as most of you have said in one way or another PACE YOURSELF. I guess it's a learning curve for me and my family. I will check out the tips bit of the site while I am sitting here. Gentle hugs to all. Xxx
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Re: Newly diagnosed today

Postby cazonline » Thu Dec 19, 2013 11:08 pm

Hi the same thing happen to me on Fri just gone. Got Dx's given a leaflet too. Was told physio has a 3 mth waiting list and go to the Dr's in the new year and they can sort your meds out. Also told to come of the Naproxen. So now im in constant pain. :(

I hope you get sorted very soon :-)
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Re: Newly diagnosed today

Postby Wendy B » Fri Dec 20, 2013 11:49 am

Sorry to hear you are having diagnoses problems, I think we have all been there. I wouldn't give up your job, just take time to think about what you are capable to do, if you are able to carry on then you can, pacing yourself on a daily basis is a big help, don't let the Fibro win I try and ave a go at lots of thing, there are lots I can't do which I could do years ago, but there is a lot of things that I never thought I would be able to do
Take care
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Re: Newly diagnosed today

Postby denys » Fri Dec 20, 2013 10:18 pm

Hi to all :-D :-D :-D :-D :-D
Denys

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