Question Time at Nine (9pm) Q3 - Fibromyalgia Acti...

Fibromyalgia Action UK

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Question Time at Nine (9pm) Q3

Mdaisy profile image
38 Replies

Hello FibroAction Members,

Please find the graph showing results from yesterday.

For Discussion: Are strong Opioids ineffective? as it is reported we have limited Opioid receptors. I have certainly found this in my experience, how about you? With the exception of Tramadol, possibly due to it's Serotonin pathway.

I know we currently have minimal participants but it should build up when it has been up & running a while and the word gets out! Thank You to those who did contribute :)

Q3. Where did your pain start?

a) Right upper quadrant (right shoulder)

b) Left upper quadrant (left shoulder)

c) Right lower quadrant (right hip)

d) Left lower quadrant (left hip)

e) Hips & pelvis

f) Neck, head & shoulders

g) Either right or left sided (hip & shoulder)

h) All over

AND

When did a Health Professional decide it was time to do further tests?

a) In the early stages when you first identified pain experience

b) When there was 2 or more areas above identified as painful

c) When other symptoms were identified ie Fatigue, Lack of concentration, IBS etc

d) After repeated visits to the GP, asking for referral and/or second opinion.

Please Note:To increase involvement in our community I intend to share on Facebook & Twitter, so please can you ensure any content you contribute is not really personal and/or your avatar (forum/community name) is anonymous to protect your confidentiality.

Please add your answers & tomorrow at 9 I'll post the results plus another question - I thought I better add this as some of you may be wondering what's the point of this post!

Many Thanks :)

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Mdaisy
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38 Replies
Mdaisy profile image
Mdaisy

A & D :)

C and b

Squindles profile image
Squindles

Q3 ) none! Mine started in both thighs!! Next question, my answer is A!

lou60 profile image
lou60

H&C

Cleaner profile image
Cleaner

H & A

Jackieblu profile image
Jackieblu

H and D

hamble99b profile image
hamble99b

1st part e&f

2nd part b

weetam profile image
weetam

F & D

B and D

eli2a profile image
eli2a

F & D

TheAuthor profile image
TheAuthor

H and A for me.

Thank you Emma x x

Shadows-walker profile image
Shadows-walker

Hi this is difficult as for me the pain came on over 24 hours and was everywhere and I was rushed into hospital,as I couldn't really move so H and then continued to treat me without really having any definitive diagnosis then D

Hope that helps chris

Shadows-walker profile image
Shadows-walker

Hi this is difficult as for me the pain came on over 24 hours and was everywhere and I was rushed into hospital,as I couldn't really move so H and then continued to treat me without really having any definitive diagnosis then D

Hope that helps chris

H and A

But I must add that was in Switzerland!

phlebo123 profile image
phlebo123

E and D for me

Grandma24and1 profile image
Grandma24and1

F and A

Ginsing profile image
Ginsing

H & D

Betty67 profile image
Betty67

All over,

started while I was pregnant so was told that was the reason and so 2 years before more tests.

H . Mildly aching muscles that came and went.

C. symptoms were mild and intermittant for about 25 years until a major flair set them all off. Big time. until then i had only mentioned them to the doctor now and then and as tests kept coming back clear i didnt let them bother me

Sue

neilwaud1969 profile image
neilwaud1969

f & d (for being for continuous headaches, thought to be migraine then cluster)

Now more than 30 years after symptoms started I am

h & d

pineapple_head profile image
pineapple_head

B and C

Ian123 profile image
Ian123

H and D but it was a rheumatoligist not my GP who finally diagnosed

Furry profile image
Furry

F and D

teddybear7 profile image
teddybear7

H & a

Reykua profile image
Reykua

D, F & D

Hopey profile image
Hopey

G , when my blood results came back positive

Mdaisy profile image
Mdaisy in reply toHopey

Hello Hopey,

Bloods came back positive? Please can I ask what you mean ?

Emma :)

FibroAction Administrator

Hopey profile image
Hopey in reply toMdaisy

Positive RNP ( from ENA screening) ANA speckled DsDna positive also low positive ccp apparently CTD. For the fibro was sore points when rhuemy pressed on them aches pains and stiffness in joints fatigue headaches

Sniffer8 profile image
Sniffer8

F & D

jillylin profile image
jillylin

C and D for me.

Ktatmolehole profile image
Ktatmolehole

3. F started in neck and over eye and neck became very stiff and painful.

d. I actually asked to be seen by a fybromyalgia expert as my doctor just told me it was arthritis in spine & slipped discs after MRI scans, ended up having knee replacement at 45. But still the pain and exhaustion continued and I began to feel I was a hypercondriac and I think my doctor thought that to. So I changed to a doctor who actually listened to me and I could ask the question do I have fybro.

I have learnt through it all that you must become more assertive and say it as it is, even if that means you take a list in because of the forgetfulness. It has been a hard journey but know I now what I have I can cope better and listen to my body.

Sorry if I've rambled on when all you wanted was answers. LOL

Mdaisy profile image
Mdaisy in reply toKtatmolehole

Don't apologise, it's nice to hear others stories :) , Q4 will be soon posted ! :) I look forward to your comment :)

Jayne32 profile image
Jayne32

Q3 : E & F throughout legs, ankles

C : widespread pain, fatigue & cognitive disturbance led to rheumatologist referral

Jayne32 profile image
Jayne32

Q3 : E & F throughout legs, ankles

C : widespread pain, fatigue & cognitive disturbance led to rheumatologist referral

fenbadger profile image
fenbadger

3 A 4 A (I think). We did a lot of elimination exercises, and even now he's a little sceptical about the name but recognises there's a pain problem.

It's hard to really say where it starts as its ever present, but in a flare it seems to take a particular course against my logic. I used to think it was flu as it came on the same time each year and followed more or less the same order. Right shoulder, knee, elbow hip then over to the left, then down the back. . . . then down the legs - its why I thought it was flu as it seemed to be in the joints more than anywhere and I was snivelling at the same time (there was also a clue in the weather)

OK man flu but due to the presence of testosterone or absence of oestrogen it's more likely to be fatal for us so we need much more mollycoddling.

Mark Porter on Radio 4's Inside Health the other day was talking about studies into painkillers particularly codeine.

You'd need to listen again but in a nutshell (case) it's pretty useless, little better than placebo. So people with or without advice increase the dose until it causes other harm - fatal and near fatal.

I can vouch for that. I have it on repeat and just don't use it unless I'm screaming, then in high - ish doses with paracetamol and anything else so you might see me covered in blankets, heat pads and stinking of a skin preparation.

The only things that have truly worked for me , and I'm going back 40 years is DF118 and nitrous oxide.

I don't get nausea or hallucinations with morphine - so was it placebo or ineffective?

Tramadol is also useless in "normal" quantities. Shame the pain nurse only told them this when I was discharged, when it was too late for the information to be of any use.

Yes, the pain does go away on its own eventually but is it really necessary to suffer so much while it's there?

The only tongue in cheek bit is the man flu, the rest is gospel

Mdaisy profile image
Mdaisy

Hello Members, Calling for any more answers please before 9pm :)

64notout profile image
64notout

b and a

kate_penney profile image
kate_penney

H&C

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