rheumy/doc/

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rheumy/doc/

Postby ouchiemama » Wed Apr 03, 2013 10:54 am

Hey people, I have not been diagnosed yet as am waiting for a rheumatologist app (3 weeks so far, hope its soon) but my doc has suggested fibro & I agree after reading up on it it sounds just like me

Anyone know how long it takes for an nhs app??

Im on amitriptyline 30mg, sertraline 100mg and just cocodomal 8/500 and ibrufen but I am still so sore majority of the time...will the rheumotologist prescribe anything else or does the doctor have to?

I really want to go back to the doctor but thought I better wait till I had seen the rheumy to see if this is what I have but I am struggling! :(

Will stronger painkillers even help?

I already feel like a hypochondriac & a wimp & try to ignore it a lot of the time, telling myself I am fine & get on with it then I am lying in bed at 8pm crying with aching shoulders, back, stiff nick, durling legs, burning feet & random shooting pains...am I just going to have to get used to feeling like this?!

Sorry its a bit of a ramble, I need to function for my 3 kids.

xx
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Re: rheumy/doc/

Postby LouLou » Wed Apr 03, 2013 1:06 pm

hi ouchiemama

It's hard to say how long the appointments take for the NHS as it's so different for each county/area. Fingers crossed one comes through for you soon though, as I remember feeling just like you are when my GP said the same to me and I waiting to see a Rheumy.

When I saw the rheumy he confirmed FM and then referred me back to the care of my GP. I then saw my GP and we went through my options for pain meds/treatments I could get etc and encouraged me to find my own ways of dealing with the pain and to let him know how I got on.

We have a catch up every 3 months or so where he checks my meds, checks how I am and just generally chat about how I'm coping etc.

Your GP can at any time adjust your meds if you are really struggling in between the time you see your Rheumy. Mine just looked at what I was taking and agreed with my GP, your Rheumy may do the same or he may have some recommendations himself which will be sent to your GP.

In regards to different strengths I know that you can get co codamol on different strengths (they have to be prescribed though) it all depends on the other tablets you are taking, how well they react with each other as well as any other health problems which may affect you taking tablets.

As far as I know there is no magical one tablet or one comination which takes all pain away, many of us have had to take months even years to find the right combination for us and though it doesn't completely take the pain away, it should improve how you feel day by day.

The 2 things that really help me when I am in a lot of pain is my electric blanket on my bed and hot water bottles. I find heat really helps to ease the pain. I also live in the bath lol.

If you are really struggling go and see your GP, I'm sure they will help you while you wait to see a Rheumy.

Good Luck I hope you are able to get something to help you through.
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Re: rheumy/doc/

Postby FluppyPuffy » Wed Apr 03, 2013 1:23 pm

As LouLou has said, it's difficult to say how long it might take for your appt to come thru as times vary so much from area to area. You could try contacting the rheumy dept that you are being referred to and see if they can give you a idea of how long it might be before yu are seen.

Meds wise, there are various things in different strengths that can be tried, this linky might be helpful http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx The co~codamol strength you are currently on is the lowest one, so it might be worth seeing if you can try the next one up to see if that helps.

We each have our own cocktails of meds and treatments to help us get thru the FibroDay. Unfortunately it's a case of trial and error to find what helps, which always means time and patience are needed to get there :facepalm: :facepalm: :facepalm:

It's not easy to say what the rheumy you see will do as they each do things in their own way. What LouLou has described is what most of us experienced, however there are some who have felt the need for additional tests/seeing other specialists as part of the process in finding out the reason for what the patient is experiencing. For meds, they tend to recommend/make suggestions about things to try, with the prescribing tending to be done by your GP.

I'm another fan of heat in dealing with the achys and hurtys. My leccie blankie is now my best friend, and I find soaking in a hot bath can help with things, esp my legs and hips.
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Re: rheumy/doc/

Postby ouchiemama » Wed Apr 03, 2013 4:41 pm

Thank you for replying.

Never thought of phoning the dept at the hospital to ask roughly how long, I will do that just now.

Hot water bottles help sometimes/some bits as does a heated neck support thing..unfortunatly I dont have a bath, could really do with getting 1 put in though, showering isnt exactly relaxing & washing my hair = ow, ow, ow aching arms!

I have read a lot of info since the doc mentioned fibro...im just in limbo just now, waiting..impatiently! lol.

I just keep thinking/hoping I will wake up fine 1 day which I could do...until I get a formal diagnosis I think I will keep thinking that...& what if its not this...?!

Roll on bedtime...thats all I can think from practicaly the moment I get up & crunch & crack & ouch my way to the loo :(

Ahhhhh, sorry all I seem to do lately is moan (&not in a good way lol) (I have somehow still got a bit of a sense of humour which stops me going completely mental)

xx
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Re: rheumy/doc/

Postby sjc » Thu Apr 04, 2013 9:36 am

Hi there,

I am been referred to the rheumatologist department at my local hospital in Derby. To be honest and from what I have read, I don't think one will received much help from a rheumatologist apart from just confirmation of your diagnosis, maybe a medication maybe recommended, and general advice maybe given. I know that when one has a mental health specialist, like a pyschiatrist, usually you get seen as an ongoing case so you get an outpatient appointment every 3-6 months months depending on the situation...but I know that most other specialists they only do a one or two appointment check up and that is it I am afriad, then it is then back to the GP again.

I think it is sad, because I feel that fibro patients should be seen as important as any other long condition, and I think that we should be able to have long term support from rheaumatologists...I am not saying we should be seen every week by them, but we should be seen every couple of months by a specialist so we can talk about medications, flare ups etc...

I don't know if anyone else is like it, but I hate keep bothering my GP surgery, as I feel like I am wasting their time, and I feel like a flipping hypocondriac all the time...my gp surgery tend to just offer a blood test, then kind of say that because one's blood test come back normal, then there is nothing that can be done....so then gp's tend to just throw fibro sufferers a painkiller or anti-depressant...

Even tho fibromyalgia cann't be cured, I feel that there is more help and treatment available out there that we could access, but unfortunately, GP's and the nhs guidlines only want to give up painkillers and anti-depressants.

I have been off work side of a long time now, and even though society didn't cause my conditions, but I feel that I am annoyed at the nhs and Gp's in general because I feel that fibro doesn't get taken seriously.

Take care folks...xxxx
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Re: rheumy/doc/

Postby LouLou » Thu Apr 04, 2013 9:48 am

ouchiemama wrote:I have read a lot of info since the doc mentioned fibro...im just in limbo just now, waiting..impatiently! lol.

I just keep thinking/hoping I will wake up fine 1 day which I could do...until I get a formal diagnosis I think I will keep thinking that...& what if its not this...?!


I was in that oh so lovely place called limbo like you ouchie until I got my diagtnosis. Even though my GP had already said that's what he thought I had and after doing some reading it seemed like everything just clicked when I read about FM, I still had that small small feeling of hope that they would say it was something else and they could cure it.

When I got my actual diagnosis it was a relief to have a name for what I was feeling, but also a huge shock and I spent the week crying because it was official and that it wouldn't just go away.

I must say that the Rheumy I saw (twice) and my GP have both been very very good to me. I have a review with my GP every 3-6 months now to see how I'm getting on, to check the meds I'm on etc. He is always open to my suggestions too about whatever treatment I want to try.

If you do get a few minutes ouchie take a look at the Stages Of Grief thread. It's a fab thread as it describes all the stages of feelings you will possibly go through during your FM journey and diagnosis and we have all added our thoughts and experiences to the thread.

I have everything crossed that you get your appointment soon and it's all smooth sailing in terms of getting your diagnosis and the relevant treatment.

You're not alone in this you have a fibro family now lol.

Take Care
xx
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Re: rheumy/doc/

Postby ouchiemama » Thu Apr 04, 2013 1:43 pm

Thank you for taking time to reply, everyone is so nice on here & it is great to be able to talk to people who know what I am talking about.

Suppose I will just have to struggle on best I can until the hospital app comes through, & try not to drive myself totally crazy with all the what ifs going round my head :crazy:

xx
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Re: rheumy/doc/

Postby lolo73 » Thu Apr 04, 2013 8:58 pm

I think all new referrals need to be seen within 18 weeks. :-)
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Re: rheumy/doc/

Postby lolo73 » Thu Apr 04, 2013 8:59 pm

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