updated! Diagnosed at last, now what?

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updated! Diagnosed at last, now what?

Postby lucygoosey » Tue Nov 16, 2010 11:00 am

Hello,
I have been ill off and on for the past year or so without a diagnoses. I started with IBS last summer and the doc just gave me some pills and sent me on my way without any explanation. Not long after this I noticed pain in my ribs on the left side which got worse & worse. I eventually dragged myself to the docs in the new year and was put on a range of drugs related to my stomach.
I had bloods done and an ultrasound to check my gall bladder - everything came back negative. I've seen a specialist who had no idea why my side was hurting and decided I was constipated & probably suffering from severe IBS. He sent me on my way and said he'd see me again in 3 months (this was in June)

I decided to try changing my diet and after cutting out gluten my IBS has pretty much vanished, however the other symptoms that I assumed were IBS haven't. My ribs still hurt, some mornings when I get out of bed I am hobbling round like an old lady as I'm so stiff. My shoulders ache and so does my lower back, I am very oversensitive to the slightest bump and I am quite exhausted.
I returned to my GP who has said I have musculoskeletal pain in my ribs and he prescribed amitripyline. I asked him if it could be Fibromyalgia and he said it might be but that there was no way of testing. From what I've read so far this isn't entirely correct and I'm unsure of what to do next. I don't want to take these drugs as I don't feel that I need them just yet, I'd rather cope with the pain than the side effects. I am keen to try and get a diagnoses for my peace of mind and so that I can get on with sorting myself out.

Can I ask my Doc to refer me to a rheumatologist for further tests? And if he says no can I get a second opinion? I'm really not sure how to go about all of this so opinions would be much appreciated.

Thanks,
Lucy
Last edited by lucygoosey on Fri Mar 18, 2011 2:18 pm, edited 4 times in total.
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Re: So, the Doc says it might be Fibro-now what?

Postby FluppyPuffy » Tue Nov 16, 2010 12:52 pm

:wave: and :welcome: to the funny farm :crazy: Sorry to hear how things have been for you over the past year, but you're in good company with the rest of us now. The things you've described symptom-wise are some of the symptoms us fibromites share. The usual sort of route to a dx is blood tests and scans etc to see if there is anything causing the symptoms. For most of us, these come back showing there isn't an underlying cause for the pain, fatigue etc. Based on that, the next usual step is referral to a rheumy, who will ask questions, check movements etc and (hopefully) do the 18 point test. Here's a linky to explain it far better than I can

http://www.fibroaction.org/Articles/Tender-points-Trigger-points-and-Pressure-points.aspx

Based on that and the various tests, the rheumy then makes a dx, might suggest meds, then care may be passed back to you GP, unless the rheumy feels you need a follow-up appt.

You should be able to ask your GP about a referral to a rheumy. If they aren't too helpful, it might be worth seeing if there is another GP at your surgery who is more prepared to do the referral. There's lots of info on here that could be helpful as well.
:goodluck2:
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Re: So, the Doc says it might be Fibro-now what?

Postby dizydaisy » Tue Nov 16, 2010 2:51 pm

hi.......welcome to the club, its not all bad. I have been a member now for over 10 years and believe me its easier to talk about with the medical profesion now than it used to be. I was lucky, if you can call it that , my father had been an unknown sufferer for many years. had numerous tests for everything under the sun, and after the medics almost gave up on him and said was all in the mind along came one who listened again, tested again and rulled out all the usual, he at last had a name for the pain he was in, and yes that very fact made him feel better as at last it was not in his mind after all.

Thankfully, I had usual tests for everything else, then remembered to tell my lovely GP about my dad, he spent ages researching through various mediums and came to th conclusion that yes I had " it " too. It is not hereditory but can and does run in families. I watched dad suffer as he thought exercise or moving about were painful, I now know they really help, yes it takes ages to get up in the morning and get upright and mobile but I do then the days not so bad, if I sit too long it gets bad, so I move about, if I move about too much it hurts so I sit down, I work full time in a relatively active job, where I am lucky enough to be able to sit and move when needed. I take anti inflamatories with some success, if I stop them life is not so much fun. When I am in real pain I resort to some strong pain killers, a hot bath or shower my TENS machine or anything else I find that works today.

Don;t get down hearted, you can live with this, it is a lot better than loads of other things it could have been and you can and must be in control of it and you. The tests suggested sound good, I always think if you have a name for something it crosses out all the things it could have been.

It comes in waves, its not there all the time every day. You will learn to recognise what "sets " you off. I know if I have a ful scale row with my young daughter over usual teenage things that goes on a bit, I will suffer for it for the next few days with IBS and pains here and there, getting very cold gets me everytime, so I always wrap up warm, the one thing I can't sort out are the painfull arms that feel as if I have been playing volley ball with arms in the air for hours, I wish.......

I am 55, work full time, play with my grandchildren, walk the dog, decorate and garden, on my bad days I may read more or sit more but life goes on and can still be enjoyed......I wish you luck with learning more both about " it " and you :
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Re: So, the Doc says it might be Fibro-now what?

Postby denys » Tue Nov 16, 2010 3:03 pm

Hi and :welcome: to the forum, the advice from the last 2 posters is good, anti inflammatories shouldn't work as FM does not cause inflammation but as you will see throughout the site what works for one person will not necessarily work for the next unfortuantely.

This is what makes FM so difficult to treat, dizydaisy has control of her FM and that is wonderful, but not all of us are so lucky. My pain is there all the time and I have gone from very active full time worker, to virtually housebound and have just been referred for a wheelchair.

It has taken a couple of years to get to this point and it may never get that bad for you, it also can just go into remission so there is plenty of hope and as has been said there are a lot worse things it could have been.

We try to stay positive on here and have a bit of a giggle, but the main thing is we know what you are going through so we can empathise with you. Definitely ask for a referral and get a second opinion if your doc is unwilling. Print off some of the info from here and take it along to your next appointment, it might help :goodluck1: and let us know how you get on :hugs: :hugs: :flowers:
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Re: So, the Doc says it might be Fibro-now what?

Postby lucygoosey » Wed Nov 17, 2010 10:29 am

Thankyou for all your replies, it is nice to know I'm not going mad and this is an actual illness! There are days when I do wonder if it's all in my head as the tests always come back negative. They've done blood tests on me every 3-6 months for the last year and everytime they come back negative I've felt relieved but a bit down that there is nothing I can pin it all on. So far they've found no inflammation and the last time I had bloods done I was suffering a fair bit so I guess it makes FM a little bit more likely.
At the moment my ribs, back and shoulders are just so sore :(
Last week my hip was hurting and my wrist which was a new one for me, it was waking me up at night. The pain is always on the side I prefer to lie on in bed!
I haven't managed to get back to my GP as my youngest daughter has been poorly this week so fingers crossed I can get there either tomorrow or friday. I'm in the docs for a flu vaccine later so I'm going to pester them then.
I am determined not to let this beat me and luckily I have a very supportive husband. I've been doing some gentle yoga every day before bed which does seem to help a bit.
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Re: So, the Doc says it might be Fibro-now what?

Postby lucygoosey » Tue Dec 14, 2010 11:14 am

Just to update you all - I saw my GP last week and asked to see a rheumatologist. He asked me if I was sure and how much further would it get me. I explained that if I had some kind of diagnoses I could move forward knowing how to deal with it and that it would give me great peace of mind. We went over things again and he said that any rheumatologist he sent me to would just say it was fibro and send me away again, so he wanted to send me to the best he knew so we could be sure. The only problem is that it will be quite a wait, but hey - at least I'm going to someone who can help.
I'm having another flare up this week after a few good weeks so I'm working on writing all my symptoms down. I'm also trying to look at what may trigger it but I don't know where to start with this. If people could tell me common triggers I would appreciate it! Does anyone keep a diary and can give me any pointers on what I should be recording ahead of my rheumatologist appt?
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Re: Doc says it might be Fibro and he's referred me!

Postby denys » Tue Dec 14, 2010 11:32 am

Hi, lots of people on here keep diaries and most seem to record where the pain is and the strength using the 0 to 10 scale. record your mood and what you were doing that day.

One of the most common triggers is over doing things and it can be a couple of days before, so you might not immediatly recognise it as a trigger. Keeping the diary will give you an idea of what is causing you to flare.

Well done for sorting things with your GP and :goodluck1: with your appointment, you seem to have things in hand :hugs: :hugs: :xmaswave1:
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Re: Doc says it might be Fibro and he's referred me!

Postby FluppyPuffy » Tue Dec 14, 2010 12:19 pm

:woot: :woot: Glad you've got your referal :fingerscrossed: you get a dx and can get some treatment and help started :hugs: :hugs:

I've done the diary thing off and on over the years I've had FM. At times it seemed like I was writing the same thing over and over again, but it was thru doing it that I was able to see how I was being affected in all ways, not just the pain. I found that even doing another 5 minutes or so of anything is enough (for me) to set things flaring up :? Tension/stress can be a flare-causer as well, even the smallest disagreement with DS can add to it all :nono: :facepalm:

Like denys has said, record your mood, pain level and where it is, I also kept a record of what I was doing at the time, and with the mood side of things, I'd also write down any thoughts that were in my head as well, no matter how random or strange they were. I'd keep a record of what I was eating and drinking as well.

:goodluck2: with your appt :fingerscrossed: you don't have to wait too long. Anything you want to know between now and your appt, just ask and we'll do what we can to help :xmaswave1: :wave:
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Re: Doc says it might be Fibro and he's referred me!

Postby deathvalleydemon » Thu Dec 16, 2010 9:30 am

hi all, not been on in a while, been in too much pain...

went to get my results for my nerve studies on tuesday and the results were not good...
ive been referred to a rheumatologist and i am awaiting an appointment, the doc i saw about the results told me there was "serious concern" over my right side (especially my knees and ankle) and the widespread pain in my neck, back, shoulders, hands, feet.. and thats why he referred me...

since ive been on last i also went for my medical regarding my industrial injury benefit claim, still awaiting the reply..

hope youre all well :)
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Re: Doc says it might be Fibro and he's referred me!

Postby shazq » Thu Dec 16, 2010 10:50 am

Sorry the results were not good dvd.
:goodluck1: with the Rheumy, hope they can come up with something to get you out of the pain. :hugs:
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Re: Doc says it might be Fibro and he's referred me!

Postby denys » Thu Dec 16, 2010 2:34 pm

Sorry you haven't been too good DVD hope you get some answers and more importantly help soon :hugs: :hugs:
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Re: Doc says it might be Fibro and he's referred me!

Postby hallamcat » Thu Jan 13, 2011 5:00 pm

hello everyone :wave:
I went to the doctors today i feel so luck that i have a understanding doctor, ive had my blood tests done all o.k, so i asked my doc to refferre me but he said that hes going to send me to fizzio first see if that helps if not he will do then. He said that they cant do much to help he thinks its a waste of time. :dunno: :needhug:
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Re: Doc says it might be Fibro and he's referred me!

Postby lucygoosey » Thu Jan 20, 2011 5:41 pm

Just to update my doc seems convinced that it's Fibro (maybe he's been away reading up on it or something) and he is very interested to see what the rheumy says about me as my costo is the worst he's seen.
On the bad side - no idea when the appointment will arrive as the department is very short staffed.
On the good side - I started on Gabapentin and it is easing alot of my pain, just a few side effects like wobbling around.
So at least we're making progress! And I haven't had a flare up since before xmas now so I am feeling quite happy. :D
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Re: updated! Doc says it might be Fibro and he's referred me!

Postby FluppyPuffy » Thu Jan 20, 2011 8:29 pm

Glad things are moving in the right direction for you lucy :clap: :clap: :woot: :woot: the Gabapentin is helping, hope the side effects don't last too long :fingerscrossed: :fingerscrossed:
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Re: updated! Doc says it might be Fibro and he's referred me!

Postby shazq » Thu Jan 20, 2011 9:51 pm

Hope you dont have to wait to long for the app. Glad the Gaba`s are working. :hugs:
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