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The UKFibromyalgia Forums • View topic - New to the group...



New to the group...

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

New to the group...

Postby Loumoo79 » Sat Jan 19, 2013 12:09 am

hi everyone, I'm Louise, 33, married to Esteban, and have been referred today to a rheumatologist by my gp as he thinks I may have Fibromyalgia.

I am a momma to 2 disabled children, so have put alot of the feelings of tiredness, arm,back,neck and shoulder pain and headaches down to looking after Alfie, 4 and Alejandro, 3. Alfie has cerebral palsy, autism, global development delay, epilepsy, kidney problems, double incontinence, a congenital birth defect, scoliosis, abnormal skull shape and he's a toe walker, and Alejandro has extreme low muscle tone, Hypermobility and suspected cerebral palsy. I feel a bit numb to be honest.

anyway I wanted to say hello, and meet a few people who could maybe tell me what to expect from the rheumatologist?

thanks everyone

Louise
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Re: New to the group...

Postby bekindtoyou » Sat Jan 19, 2013 4:44 pm

Hi Louise

Im new too.....you sound very busy, I hope you get on well with your appointment and if I see my rheumo first will let you know. Seems to me quite a common theme that people are just getting on with it thinking it is normal. I wish you well and look forward to hearing how you go on.

All of the best to you :-D

Kitt
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Re: New to the group...

Postby Loumoo79 » Sat Jan 19, 2013 5:48 pm

Hi Kitt,

the gp told me it would be about 3 months for an appointment and I would see a rheumatology triage clinic first.
I felt like I was being lazy before and never linked everything together, our gp is very good, and I'm pleased to have an answer and it makes sense to me now.

good luck with your appointment, I hope it goes well for.you. and I will let you know too when I hear anything.
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Re: New to the group...

Postby FluppyPuffy » Sat Jan 19, 2013 6:01 pm

:welcome: to our FibroFamily Louise :wave: :wave:

Each rheumy tends to work in their own way so no appt ever seems to be the same. What we can do tho is give you some general advice about what could happen so that hopefully you will have an idea of what could happen . Sit down and get yourself as comfortable as you can and :fingerscrossed: :fingerscrossed: :fingerscrossed: some of this will make a bit of sense :mrgreen: :mrgreen:

If you can, get someone to go with you to your appt, not only can it help with moral support, an extra pair of eyes and ears can help with remembering what was said. Before your appt, write some details about your symptoms/problems, how long you have been experiencing them, how they affect you etc, as well as any questions that come to mind, and take this info with you when you go for your appt.

Altho your info will have been sent and be in your file with the rheumy, they tend to check the general stuff like BP, weight etc and then ask you general questions about your health, any family problems/illness etc. From there, it will possibly go onto your symptoms/problems, which is where your sheet of details can help as it's very easy to forget things that you wanted to include, and your sheet acts as a reminder about those things you want/need the rheumy to know about.

From talking about how you are affected, the rheumy may want to check your tender points, as this is the closest thing to a test for FM. This linky tells you a little about the points and the test http://www.health.com/health/gallery/0, ... 35,00.html.

From there, depending on what you have said, what has been tested etc, several things could possibly happen. With everything that the rheumy has read and heard, you may be given your dx immediately, as well as any info that they rheumy thinks may be useful, then discharged back into the care of your GP. Or your rheumy may decide that a follow~up appt is needed. With either of these options, the rheumy will contact your GP with details of what has been said and decided during your appt, as well info about any meds that are being recommended, treatments that may be beneficial etc.

Before giving a definite dx, the rheumy may feel that additional tests, scans are needed. Once these have been done and the results are available, a follow~up appt will hopefully lead to you being given your dx. Again, your GP should be notified about things.

viewtopic.php?f=3&t=13321 This linky will take you to some downloadable info from FibroDuck relating to appts, so having a look at that could also be helpful for you.

I think I've covered what could happen and various outcomes. If I have missed anything, someone will :penguin: :penguin: :penguin: along and add to things.

:goodluck2: :goodluck2: :goodluck2: with getting some answers. While you're waiting for your appt, have a look around the boards. They are full of info and advice that you may find helpful. There is also plenty of support for those times when it feels like it's all getting a bit much. Anything you want to know, just ask and we'll try to help you with it :grouphug: :grouphug: :grouphug:


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Re: New to the group...

Postby shazq » Sat Jan 19, 2013 6:28 pm

Hi Louise :welcome: to the forum :wave:

Fluppy has given you lots of good infomation so not much left for me to say but any questions just ask :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: New to the group...

Postby monica » Sun Jan 20, 2013 9:17 am

Hi Welcome to the forum :wave:
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Re: New to the group...

Postby Loumoo79 » Mon Jan 21, 2013 10:00 pm

Thank you FluppyPuffy, shazq and Monica.

Thank you for all the information, it will be useful to have when I do have my appointments. In Staffordshire, they send you to a rheumatology triage to see how soon you need to be seen.

Yesterday was a very bad day for me, tiredness and pain mainly. I fell heavily on my right arm late October time and my shoulders/neck and arms have been bad since. I've been going to my gp on and off now for about 5 yrs, with IBS, back, shoulder, neck, arm, hand, hip pain and also headaches and migraines, I have headaches daily and migraine 4 out of 7 days a week. And sometimes like today, I've had a headache all day, it went, then within half an hour it's back again. I've never thought it was all connected,,but after reading info on here, especially symptoms I've said yes to every single one. Now it all makes a lot of sense to me...

I just feel so guilty for my husband, he's been so good, but with the boys and now this, it's a lot for him.

Thank god for this group. Thank you for your help.

Louise
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Re: New to the group...

Postby csangel » Tue Jan 22, 2013 11:58 am

Hi Louise :welcome:

Just wanted to say I set myself up for my rheumy appointment to go badly, and it went really well, and wanted to wish you good luck!

Sorry you're having a bad day. It's always when we feel worse, we get miserable and feel bad for those we care about, caring for us. Just remember it's not your fault you're ill, and although we all get that feeling of guilt for husbands etc. it's a lot for them to cope with, but it is for us too ;-)

Lucy x
Health is not valued until sickness comes. ~Thomas Fuller
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