Very close to diagnosis...

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Very close to diagnosis...

Postby csangel » Wed Jan 16, 2013 8:22 pm

Hello all,

I've posted a few times here before, but have been in denial/ feeling a little better the past month or so and sort of avoiding thinking about the whole fibromyalgia thing (as much as is possible when in pain!) Had a visit to the Rheumy yesterday, and it seems the inevitable will happen as soon as these latest bloods come back, so thought I would start again!

Thanks to this site I was all prepared for the appointment with a list and my husband as back up. Went in, gave him my list and he asked some questions, etc. then examined my feet and hands - blimey he knew where to press! :hit1: Asked me what I thought it was?! and then pretty much agreed that was the way he was leaning, and unless the bloods come back with something else, he will be diagnosing me with fibromyalgia...

(also being tested for low vitamin D as he says this is common and is expecting mine to be low... not sure how he can tell that from looking at me but hey!)

Really surprised how easy it all was... think I built myself up for a big let down and more fighting... he suggested some meds - amitryptalyne or doxy something I think, that he will suggest to the gp for them to prescribe. Now I had been prescribed Sertraline a few months ago, but as I was feeling better I took the decision to come off them as I couldn't tell any difference to being on them. Am a little cautious about going on any more long term meds like this again - don't know if it's because I don't want to take them, or if it's because I'm in denial about all the pain and needing something like this... probably a mixture of both... :crazy:

Went back to work yesterday after the appointment, a little sore from the prodding but not too bad. Felt really uncomfy last night so had a hot bath and early bed, then this morning couldn't get out of bed... :( So have spent the day off work (again) and in bed apart from a couple of hours in the middle of the day. The hubby is working (tax return... eugh) so no idea when he'll be home, and he's rung to tell me to get some food... not sure how I'm going to accomplish that... :roll:

Can't belive how tired I still am from being in bed all day! I'm in agony and really don't know what to do with myself... :cry:

So that's me... I guess the questions I'm after answering are if and how you cope with no meds?! Is it possible/sensible?!
What do the antidepressants do for fibro - do they help the pain? I've been struggling to get anyone to prescribe me anything other than naproxen- which the rheumy came out and said didn't work, but there must be something else I can get?!
And any other suggestions you might have that will be useful!

Sorry it's a lot longer than I thought it was going to be... Want to get my head around things before I see the gp again, so I can start off on the right foot.

Thank you for reading this!

Lucy.
Health is not valued until sickness comes. ~Thomas Fuller
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Re: Very close to diagnosis...

Postby stormguy » Wed Jan 16, 2013 9:47 pm

Hi Lucy
The drug made for fibro is duloxetine. Ask your GP if you have been diagnosed with fibro.

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Re: Very close to diagnosis...

Postby ElvisPresley » Wed Jan 16, 2013 9:54 pm

Hi Lucy, sorry you're not feeling too good at the moment, but it's at least better to have a diagnosis so you know what you're dealing with! I take Naproxen when I need too and find that it does take the edge off. I am on 60mgs Duloxetine, which works really well for me. I'm not saying it completely deals with the pain or anything else, but I'm better with it than without. Unfortunately it may mean trying several medications until you find one that works for you e.g. Gabapentin, Pregabalin etc., these both worked for me, but left me feeling like a zombie so decided to stop taking them. Duloxetine was the next one I tried and luckily is working. I started with a low dose and gradually increased it to see how much I needed. I don't have any side effects from this and could take a higher dose if I wanted. Different meds.doses work for different people, but your GP will help you find the right one or your consultant. Best of luck and hope you find something that helps sooner rather than later.
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Re: Very close to diagnosis...

Postby paulamcl » Thu Jan 17, 2013 12:08 am

hi lucy i hope your feeling better soon. when i was diagnoised with fm your right they do press the right buttons. thats the pressure points they hit. i was ill for a week and was sick the night of my appointment because i was in that much pain with being poked and prodded. im on pregabalin. i started off on a low dose and now im up to a high dose. i feel it works a lil but with fm the drugs can wok one day and then not the next. so far no ide effects from pregabalin. i also take vitamin d and dihydrocodiene/paracetamol and if im really bad amitripyline nit i try not to take that because it leaves me feeling like i have a hangover. its just trial and error what works for you really. sertraline wont do anything for fm. it s just an antidepressant which fm can make you feel depressed. pregabalin, gabapentin, duloxetine, amitripyline are all drugs most doctors prescribe for fm. im a ACT in a pharmacy and give out quite alot of the above for fm to my patients. hope this helps and you get something soon. you need to give them about a month to kick in and feel the benefits. if your anything like me you will want to take the drugs. i suffered for a year before i was diagnoised and now im on proper meds it has got better. :-D
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Re: Very close to diagnosis...

Postby FluppyPuffy » Thu Jan 17, 2013 12:25 am

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx Linky to some info about various meds used to try and manage FM. The anti~ds that are used (eg. amitriptyline, nortriptyline, duloxetine etc) have been found to help with sleep and pain problems. Duloxetine seems to be used more and more widely as it has found to be very effective in a lot of FM cases.

Naproxen is an anti~inflam med, and altho inflammations isn't usually associated with FM, it can provide some pain relief for some, which is why it is sometimes prescribed.

Some people find that they are able to manage without taking meds, so it isn't impossible. As to whether it's being sensible, unfortunately nothing is sensible where FM is concerned :crazy: :crazy: :crazy: Others find that supplements help them. Personally, from having some time a few years ago when I stopped taking meds, I know I can't function without them. And I wasn't as affected by things then compared to how I am now. Only you know how you really feel during the not~so~good and slightly~better times, so use that to base your decision on about what to do.
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Re: Very close to diagnosis...

Postby csangel » Thu Jan 17, 2013 1:31 am

Thank you for your replies!

I'm waiting for some more tests to come back , but the rheumy has pretty much diagnosed me already, and will confirm that when these results come back.

Duloxetine is one of the ones suggested thank you - I couldn't remember what he said! From what you have said and what the rheumy said I think I will try and push my gp to try me on that. I've been thinking aboit things, and I don't want to take anything long term, but I also don't want fibro, so if I have fibro it's probably better to take something to help! I've always been very fit and healthy so it's hard coming to terms with it all.

It's good to know I'm not the only one struggling with meds. With the problems I've had with doctors in the past for other things I want to be as informed as possible before I go back to my gp.

Thanks again for your help :-)
Lucy.
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Re: Very close to diagnosis...

Postby shazq » Thu Jan 17, 2013 6:24 pm

Hi Lucy

Most of the meds will take at least 4 weeks to fully kick in to your system so you wont feel the benefit of them straight away, you might get some side affects but the go after a short time.

The meds will only work if you are on them everyday, they will help control your pain but you cant stop them if you are feeling better otherwise they wont work & you have to be weaned off them so you will be looking at being on meds long term. :(

Amitriptyline are a good starting med as they are used for pain/sleep/antidepressant.

There are a number of meds you can try so dont worry if the first type dont suit you, its just finding the right one/combo.

Once you have your pain under control things will get a little easier. :hugs:

:goodluck1: with the Rheumy appt.
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Re: Very close to diagnosis...

Postby Fibro Fi » Sun Jan 20, 2013 6:43 am

Hi Lucy,
I know it's hard to accept that you may have this illness. I've been fighting against it for many years, but my relapse in September which came after doing some extra exercise In order to loose weight, finally made me sit up and listen. I knew I had fibromyalgia and have been suffering from it for 23 years, but its been the last 3 that have been the hardest because of the associated fatigue. After 2 years of resting and not doing much a part from exercise, I still wasn't getting better. So, I had a private appointment with a rheumatologist whom instantly diagnosed me with FMS. Like you, I have found it very hard to come to terms with it because of the change of lifestyle, but to be honest, I was only scrapping myself through life anyway. So, now I am taking all the meds prescribed and I take magnesium, calcium, multi vitamin and CQ 10 and probiotics! I was never one for tablets, but I want to live in the best health possible. I've cleaned up my diet and I have learned to pace myself even if itvmeans saying no to invites to go out and having a nana nap every afternoon!. I've decided my health has to come first. So, I'm no longer in denial and I accept my limitations in the hope that one day I can do more. So, don't worry about taking medication, if it will help you feel better what's the crime in that? My rheumatologist was very good and straightforward. He said you have a chronic illness which will probably be long term, but if you do the right things you will feel better, and its not your fault! And it isn't! This illness could happen to anyone, but its happened to us, and we just need to find a way to cope with it. So good luck Lucy, you'll get there!
Regards,
Fiona.
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Re: Very close to diagnosis...

Postby csangel » Mon Jan 21, 2013 12:43 pm

Hello :-)

Thanks for the advice shazq - I will try and make an appointment to see my gp soon. I think they'll start me on the amitriptyline first, so will see how that goes. I was planning on starting it on a Friday evening, so hopefully the worst of the side effects may have passed before I have to go to work on the Monday! Am back at work today, but still feeling fragile so will take it slowly.

Fibro fi - you've put into words exactly how I've been feeling/thinking about this whole thing! (hehe - nana nap! made me giggle :-) ) You're right it isn't anyones fault - I guess we have to remember that when we start feeling guilty for not being able to do the things we used to do.

I had a copy of the letter the rheumy sent to my GP in the post on Friday. Was really interesting reading about myself! He mentioned possible IBS and raynaulds syndrome (think I got that right?) as well, and then suggested the gp refer me to the chronic pain specialists or clinic or something along those lines, so really positive I recon. Told my boss about the letter today, but I don't think she's quite understood that the pain clinic is a good thing and was trying to be sympathetic... she's not great with feelings though! Was thinking of maybe printing off some info to give to her? Not sure she knows exactly what I've been going through so maybe that would help explain things a bit? :-?

Am feeling a bit more positive about everything really, although keep over thinking things and getting a bit down now and then. I also think I've lost contact with my best friend, and that is upsetting me a lot. She was my head bridesmaid, and has been studying to be a vet, so really busy and not much free time - fair enough, then heard she had some time off over Christmas, but haven't heard a thing since. She doesn't know much about how ill I've been recently, and I'm feeling a bit lonely... sorry, random moan there!

Hope this snow isn't causing everyone too many problems. My hands went numb scraping my car this morning... have my fingerless gloves on now, so I can use the computer, but stay a bit warmer!
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Re: Very close to diagnosis...

Postby Soapbubbles » Mon Jan 21, 2013 1:13 pm

Hi csangle,

There's lots of good advice here. It really helped me reading through this.

I don't suffer anywhere near as much as some of the people on this forum, but I have found amytryptilyine helps me with pain, insomnia, mood and ibs too. It took me several weeks to get the right dose and I had to experiment with taking it at different times of the evening to find the maximum effect to help with my sleep.

I really hope you find the right combination of meds etc to help soon.
Best wishes x
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Re: Very close to diagnosis...

Postby FluppyPuffy » Mon Jan 21, 2013 1:31 pm

Amitriptyline is one of the first meds tried when you're told you have FM Lucy, for some it can help quite a lot. It's an older style anti~d that has been found to help with pain and sleep problems, as Shaz has already said tho, it does need to be taken regularly to make the most of its benefits. It can take a while to find what is the right dosage for you (as with most of the meds use for FM :facepalm: :facepalm: ) so you may not feel any benefit from it, or whatever else you are given, at first. One of it's side effects is making you feel zombified in the morning, but with a bit of tweaking of the time you take it, this can be reduced considerably.

The Pain Clinic can be helpful, so taking up a referral to it might be worth considering. WRT your boss and understanding about FM, giving her some info could be a good idea. For the more general info about what FM involves, this linky might be useful http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx There is also similar info on the main UKFM site http://www.ukfibromyalgia.com/what-is-fm.html And to give her an idea of how it affects us on a more personal level, this might help viewtopic.php?f=2&t=4732

Not sure what to suggest or say about you possibly losing contact with your best friend :-? :-? :-? There could be a very simple, valid explanation why she hasn't been in touch, the only way you'll know tho is to actually make contact and speak to her.
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Re: Very close to diagnosis...

Postby csangel » Mon Jan 21, 2013 1:49 pm

Hi,

Glad it's helping soapbubbles. It's good to hear of positive results for you! Thank you for saying about timings - will see how things go!

Fluppy - yes the rheumy said it can make you really drowsy in a morning, so maybe trying it just at weekends first would be the way to go - I just nodded and agreed, but surely it would be worse having some, then having none for a week, then having some more? With the Sertraline, the side effects lasted a decent week before settling down, so taking it just at weekends seems really strange...?!
Thank you for the links - will have a nosey and see about passing them on.

Sorry about the random friend moan- I try and invite her round whenever we have other friends over, text her every now and again asking how things are, have even left a sort of open invite to say to just pop round when she has time for a coffee and a catch up. I hardly ever get a reply on the same day - often takes a couple of days for just one text, and with everything else going on have sort of decided not to stress about it, but not to chase her any more either if you see what I mean. I don't have the energy to do either any more!

Lucy x
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Re: Very close to diagnosis...

Postby FluppyPuffy » Mon Jan 21, 2013 2:59 pm

I get what you mean and you're not alone in having something like this happen with friends, esp after they know about your illness/problems. Some people just don't know what to say or how to react when they're told someone has such a vague and unpredictable condition, and for some reason they seem to think that not being in contact will make things easier to deal with, or will make it all go away (I wish that would happen.) Not stressing about it is the best thing to do, as well as not chasing. As you've said, energy is very precious to us and needs to be used accordingly.

Don't worry about random moans, I think most of us have had a moan and/or a rant about something on here along the way. Just letting something out that has been bothering you can make a difference.

Think I've waffled on at you enough for now :oops: :shock: Before I :penguin: :penguin: :penguin: :penguin: :penguin: off, if you are given amis to try, to help with the morning after zombification, the things that have been found to help some are taking them a couple of hours before you will be going to bed or taking them about 12 hours before you have to get up in the morning. And the rheumy saying to just try them at weekends is most peculiar as they are usually taken all the time. When you see your GP, if you are prescribed them, double check about taking them as your GP will be able to give you specific advice relating to you. And finally, I'm on sertraline and found that its initial side effects lasted about a week as well. I take mine at night so slept thru most of them, something I've done with most of the anti~ds I've tried.
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Re: Very close to diagnosis...

Postby csangel » Mon Jan 21, 2013 3:58 pm

Don't worry about waffling! I seem to be doing that more and more these days! Keep getting rooms mixed up - asked the hubby to put some mayonnaise back in the bathroom yesterday... :roll: :crazy:

Thank you for the 12 hour tip. Just got to try and get an appointment at the doctors now... that will be fun! The Sertraline side effects I had were pretty intense despite taking them in the evenings. Fingers crossed the amis will be easier!

Lucy x
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Re: Very close to diagnosis...

Postby csangel » Mon Jan 28, 2013 2:01 pm

Little update on things:

Firstly – seem to be getting over this latest flare, thankfully! Spent the weekend catching up on housework. Saturday I was all ‘not going to let this beat me’, then paid for it on Sunday and felt very sorry for myself! Hubby cheered me up by taking me out for some fresh air and a bit of retail therapy – with a helping arm to lean on :penguin:

So house is sorted, and I’m determined to keep on top of it. Have written a list of tasks for this week – one or two things a day so I do what needs doing, but don’t do too much. :bricks:

Medication wise, I’m very up and down about these amis. One minute I’m desperate to improve and fed up thinking this might be it for the rest of my life now, and the next I’m worrying about what effects the drugs will have, whether they will work and what will happen if they don’t. I’m constantly changing my mind about whether to start them or not. :crazy:

Have a doctors appointment on the 5th so will see how I feel then and have a chat to her about my worries. I got a message on Friday to say there was a prescription waiting for me, but I’m not sure I want to start them without talking to the doctor first…

Anyone been through similar wanderings? Any ideas or hugs available I’ll be grateful for!! :needhug:
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