Any Advice/Recommendations Welcome

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

Moderators: perseus, *Lisa*, FluppyPuffy

Any Advice/Recommendations Welcome

Postby Ducky34 » Wed Jan 04, 2012 1:47 pm

Hello Everyone :-D

I was diagnosed with FM back in November after over a year of endless trips to the doctors, misdiagnosis, and second opinions.

When I saw the rhematoligist, I was pleased a diagnosis had been made, but she wasn't very helpful at all and advised to eat well, prescribed amytripline and said there was support groups I could join, and leaflets at reception, according to her it is very common, however I am only 25 and I am a little concerned as there seems to be no indication of how long you may suffer with the condition, and I felt a bit "fobbed" off to be honest.

Is there any real help available?

I see a family friend frequently who is a remedial masseuse and sports therapist, I have recently seen a nutritionist to look at my diet (obviously both at my expense) but I just wondered if anyone had any ideas, tips, things that work for them??

Im open to ideas, any help would be greatly appreciated.

I have been reading the forums often through the Facebook page and I have found it useful, everyone seems very supportive of one another. :-D

Thank you in advance.
Ducky34
UKFM Member
 
Posts: 24
Joined: Wed Jan 04, 2012 11:11 am
Location: Isle of Wight

Re: Any Advice/Recommendations Welcome

Postby denys » Wed Jan 04, 2012 2:04 pm

Hi Ducky and :welcome: to the forum, I've moved your post into where to say hello as you will get more hits in here it being your first post. We have a tips and help thread on the forum which is quite handy, and there are posts to print out to give to people who have problems understanding the effect the condition has.

I'm afraid your experience is quite typical as health professionals dont seem to know what to do with us. Pacing is the most important thing to learn which is no matter what you are doing you carry out the task for a short period of time (you must stop before you start hurting) and sit and rest for the same amount of time before carrying on again.

as for how long it will last, generally for life but it can go into remission and not bother you for years or you may have it very mildly and it may not cause you any problems. But it may affect your life considerably and flare often etc. Sorry I cant be more exact but this condition affects us all differently and to different degree's
Denys

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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Any Advice/Recommendations Welcome

Postby FluppyPuffy » Wed Jan 04, 2012 2:31 pm

:welcome: to the forum Ducky :wave: :wave:

There is a lot of info and advice on here, so you might find some suggestions that could be of help to you. And as Denys has already said, there is a thread running with different things on it that we have found helpful.

If you're wanting to know about something more specific to you, you can start a new topic about it. Hopefully that would bring in some suitable replies for you.

The thing with FM is that, altho we share a range of symptoms and problems, we are all affected so very differently by it, so we each have our own particular ways of trying to manage things. Plus, as FM is so fickle, what may help one of us may do nothing for someone else :facepalm: :facepalm: :facepalm:

The one thing we all try to do is pace ourselves with whatever it is we are doing, with the hope that we can achieve something, ot finish something off without feeling too bad with it :wave: :wave: :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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Any Advice/Recommendations Welcome

Postby shazq » Wed Jan 04, 2012 5:10 pm

:welcome: to the forum Ducky :wave:

Hope you find the forum useful, we have lots of info and offer lots of support. :-D
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.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Any Advice/Recommendations Welcome

Postby Ducky34 » Thu Jan 05, 2012 10:15 am

Thank you for your comments Denys, Shazq and Fluffy Puppy. I will have a look around the site, at present I have just been reading the forums really, so I will look at all the hints/tips etc.

Oh and on another note, I'm not sure if this would be applicable to everyone but after seeing a nutritionist recently she mentioned on a link between blood sugar imbalance and worsened FM symptons, it's all worth a go I suppose so I have started the new year changing my diet and trying to stick to a low GI plan, fingers crossed I'll notice some improvement. :fingerscrossed:

Wishing you all a happy new year! :-D

I look forward to speaking to you all again soon.
Ducky34
UKFM Member
 
Posts: 24
Joined: Wed Jan 04, 2012 11:11 am
Location: Isle of Wight

Re: Any Advice/Recommendations Welcome

Postby FluppyPuffy » Thu Jan 05, 2012 11:13 am

I haven't heard of a link between blood sugar imbalance and a worsening of FM symptoms, but that doesn't mean there isn't credibility in the idea, as there is so much about FM that is yet to be discovered. And taking steps to eat a balanced, healthier diet is never a bad thing to do :-D :-D :-D
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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Any Advice/Recommendations Welcome

Postby denys » Thu Jan 05, 2012 4:46 pm

I know that if your blood glucose levels arent controlled (ie with diabetis) then a side effect is pain so it could be that she is referring to :dunno: but as flup has said a good diet is always recommended so its worth a try :fingerscrossed: and :goodluck1:
Denys

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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Any Advice/Recommendations Welcome

Postby cambridgegirl » Fri Jan 06, 2012 1:42 am

Hey lovelies,

Im in quite a similar situation - i'm 21 and was diagnosed about 6 weeks ago. Had a really good GP who unfortunately left the surgery and have seen three others who have been rubbish. One is still insisting i have just cricked my neck, despite a diagnosis!!

Ive seen a nutritionist because ive lost alot of weight since being ill. Most of my friends think im anorexic. (im NOT). She thinks i have developed an intolerance to sugar - and that in combination with tramadol side effects means i dont want to eat or frequently vomit.

But mainly, its just hard coming to terms with the thought that this is never going to get any better!

Xxx


---
Last edited by denys on Fri Jan 06, 2012 10:25 am, edited 1 time in total.
Reason: please dont add your exact location to any posts
cambridgegirl
UKFM Member
 
Posts: 12
Joined: Tue Jan 03, 2012 12:46 pm

Re: Any Advice/Recommendations Welcome

Postby denys » Fri Jan 06, 2012 10:26 am

Hi Cambridgegirl and :welcome: to the forum :wave: I've removed your link from the post as giving out your exact location could be very dangerous as this is an open forum that anyone can access
Denys

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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Any Advice/Recommendations Welcome

Postby Ducky34 » Fri Jan 06, 2012 3:43 pm

Hi Cambridgegirl, blimey I thought I was young being diagnosed at 25, so I know how you feel after being diagnosed, it sucks! :(

The nutritionist said to me that she thought I had a blood sugar imbalance, and that that connected with FM can intensify symptoms, I agree a healthy diet can only be a good thing! :-D Definately worth a try!

What did they say to you after your diagnosis? As I was discharged and she said to sought treatments such as acupuncture, massage etc at my expense. I have been put on Amytripline and left to it! :( I went back to the doctors a couple of weeks ago as it wasn't really doing anything, they also recommended co-codamol but I don't think that does much either.

I do sometimes take Ibruprofen Lysine which they recommend for migraines, as I have more recently started getting them, I assume as an effect of FM. I do also suffer with an under-active thyroid which I was diagnosed with when I was 19. So I get confused whether symptoms are related to that or this?

Do the tramadol work or just make you poorly?
Ducky34
UKFM Member
 
Posts: 24
Joined: Wed Jan 04, 2012 11:11 am
Location: Isle of Wight

Any Advice/Recommendations Welcome

Postby cambridgegirl » Fri Jan 06, 2012 11:58 pm

Cant say im a fan of tramadol - it is slowly destroying my digestive system and it certainly doesnt make me pain free! It dulls things and ivd taken it with codeine before which is good but makes me very sick.

I had a massage today for the first time, hurts like hell right now!! Hoping it will loosen me up over the next few days...

My GP is rubbish. Saw her Tuesday and had to get a referral to a private specialist - she openly admitted to having no idea what to do. I dont think she really believes me!!

I really hope you find drugs that help ... OH was thrilled when i stopped taking amytrip because it made me so horrid in the morning! Xx
cambridgegirl
UKFM Member
 
Posts: 12
Joined: Tue Jan 03, 2012 12:46 pm

Re: Any Advice/Recommendations Welcome

Postby FluppyPuffy » Sat Jan 07, 2012 12:41 am

Ducky34 wrote:What did they say to you after your diagnosis? As I was discharged and she said to sought treatments such as acupuncture, massage etc at my expense. I have been put on Amytripline and left to it! :( I went back to the doctors a couple of weeks ago as it wasn't really doing anything, they also recommended co-codamol but I don't think that does much either.

I do sometimes take Ibruprofen Lysine which they recommend for migraines, as I have more recently started getting them, I assume as an effect of FM. I do also suffer with an under-active thyroid which I was diagnosed with when I was 19. So I get confused whether symptoms are related to that or this?

Do the tramadol work or just make you poorly?


Ducky, acupuncture may be available thru NHS in your area, a bit of Googling could possibly tell you where, as well what other treatments there are. The thing with FM is tho, what may help one may not help another, so it can be a case of trial and error to find the right recipe for you. Some have found that things like physiotherapy or hydrotherapy can be of help, so they might be worth looking into as well.

With a lot of the meds used for FM, they can take a while to get into your system to start making their benefits felt. Amitriptyline takes about a month to fully get in, so if you have only been on them a short while, that could explain why you aren't feeling any benefit from them yet. If you have been on them quite a while tho, it could be that you need a change in dosage as you could have gotten used to the level you're currently on. This linky tells you about the types of meds that can be used in various combos to try and manage FM http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx

Headaches and migraines are an associated condition of FM. However when something seems to be getting worse, or is a new symptom, it is always best to have it checked out, just to be sure there isn't something else causing it.
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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Any Advice/Recommendations Welcome

Postby Ducky34 » Mon Jan 09, 2012 11:11 am

Thank you Fluffy Puppy, I will look into what treatments are available in my area, just feeling very low at the moment. Think I've been finding it harder than I've been letting on to people. Was in tears with my partner before bed last night, just feel very alone and that no-one understands (not you guy's of course) and feeling very frustrated.

Oh and Cambridgegirl I am bad in the morning too! Really struggle to get up 4 work! :(

I'm going back to the doctors this week because I need more tablets anyway, I think I'll arm myself with the knowledge re: nhs treatments and bring that up at my appointment. Sorry to grumble, thank you for your help. :-D
Ducky34
UKFM Member
 
Posts: 24
Joined: Wed Jan 04, 2012 11:11 am
Location: Isle of Wight

Re: Any Advice/Recommendations Welcome

Postby Ducky34 » Mon Jan 09, 2012 2:00 pm

Sorry Fluppy Puppy, keep typing it wrong!
Ducky34
UKFM Member
 
Posts: 24
Joined: Wed Jan 04, 2012 11:11 am
Location: Isle of Wight

Re: Any Advice/Recommendations Welcome

Postby denys » Mon Jan 09, 2012 2:52 pm

:lol: :lol: :lol: :lol: its Fluppy Puffy :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:
Denys

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.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Next

Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 3 guests