General Chat

good luck dawn, i dont think there that busy at moment they seem to answer phone straihgt away,difficulty walking is one of my latter symptoms, im really shocked at how little i can walk at moment, ive never driven and always used to walk to work and loved walking, i can go as far as over the road and thats it, i walk slow, when im at doctors she comes into waiting room, its a long corrider her and specky just walk down chatting lol, till i get there then i ask how she is and we laugh xx

you got nothing to loose dawn
give um a ring
go for it, yoou bin braver than me so far,
mind you theres nthing like that here

went for FM Course follow up today had to repeat two tests they do to see if we had improved.

First one is sit to standing 12 weeks ago I did 8 six weeks ago I did 10 today was 11 so that is on the improve mind you wore me out had to rest before I could do the 2nd test.

2nd one is time takes to walk 50 metres. 12 weeks ago was 50 seconds 6 weeks ago 53 seconds today was 50 seconds.

Was bottom of the class in both tests whoopsssssssss.

Maybe now if DLA contact them like I have put on the form they will be able to tell them I do have trouble walking and am not lying.

Also got the number for the local FM group that has recently been set up, not sure whether to give it a go or not.

thats a bonus dawn isnt it,
just knowing someone understands

Shows you that you can manage a little bit of exercise and gives you simple ones that are acheivable. And setting a goal each week helps, mine is to take the dog for a longer walk but when I maanaged that they said to change it to not further but quicker to get my heart and lungs wrking better.

Icouldnt get on with a few of the releaxation techniques but one I did manage a bit but even when I was pregnant couldnt do the relaxation so wasnt too much of a surprise.

Was good being able to talk to others with it and helping each others with ideas on how to cope with different things.

does that course help much

Julie Ann

Already on Amitriptylne 2 x 25mg at night to help me sleep, yeah right I think not.

Got me follow up for the course I went on tomorrow so will try to get appt later in week

argh pish to that dawnie,
so your head not tucked under your arm, but it is urgent cos you shouldnt be suffering with pain all time so dont feel bad about going there,
you need something to line tummy to counter act the diclofenac , cos they are strong and unkind to tummy,
also dont accept amitriptyline for head pain, ask for something else

Im on Diclofenic and have terrible heartburn thought it was just me, maybe have to go back to Drs AGAIN

Maybe he can sort out me head pain as well

Mind you Surgery has new computer system going in and asking people not to go unless its an emergency.

i tried a herbal anti inflamatry once
devils claw, that gave me stomach pains,
didnt do much for the pain in back

Liz and others, thanks for advice, I don't take the diclofenac very often as I try and manage without medication so usually average only one a day but will bear the info in mind if I get any twinges at all, I know you say do something before the heartburn starts but I really hate taking synthetic medication, would rather take homeopathic stuff.
Lizx

i read on FM site other day about lyrica, my neurologist and my boss said they are good for pain relief, my boss dont know much of FM he learnng from me i think,

only thing with lyrica is side effects i read it may cause fluid retention and weight gain, the may is only a possibility, but if it helps with pain thats good,

i have dejavu moments but put mine down to being psycic moments, most things ive had premonitions about anyway if its been dejavu, eg, dreams, ive dreamt ive been somewhere and days later it happens,
had one recently went into town with daughter, dont go into newport town much its rubbish, and they renovating one area, well i said to daughter , omg thats weird i dreamt i saw all this other night, its new so couldnt have before,

anyway another good thing for protecting your stomach with diclofenac is losec, they are also know as omeprazole
i took um before i realised antiinflamatrys did nowt for me or made me bad
this weekedn has started with bad heads, and aching shoulders worse again, topped up with painkillers im supposed to be cutting down

Liz, do you take anything with it to protect your stomach? If not then I highly recommend it. I was on diclofenac for three years before the terrible heartburn started and it was constant. When I take the dicloflex (which is the same as diclofenac but is modified release) I take Lansoprazole too which protects the stomach from damage. I would recommend not waiting for the heart burn to start though... wish someone had suggested that too me before.

Liz

hi susie hope your feeling better xxx
hi liz, only around my cycle do i feel aggression and rage, ask poor specky lol, but the de ju vu, was my main symptom, we went to dublin once , and i arged saying id been before , i hadnt lol, i was on eplim for years, but stopped to have my son, and never went back on it, good luck with your husband xx

Hi Puss, not me got it, but possibly o.h. He has been having these sort of dejavu turns, which I thought were to do with his blood pressure tablets, and I made him talk to doc and he is now waiting for apptmt with neurologist. He is still driving and working at the mo, but all that will stop while they sort medication. One of the symptoms is 'sudden outbursts of unexpected aggression and agitation' which explains a lot. Do you have that symptom too ? What medication are you on for it if any? His Grandfather had Parkinsons Disease, which this can be confused with so will have to wait till he is seen by the neurologist.
My doc just gives me diclofenac? for the pain - I tried amitryptiline for sleeping but didn't work.

Susie, hope you get some answers and some help soon to ease the pain.
Lizx

hi everyone
i was woken up this morning at 6.30 with the most awful pains in my hips.it felt as though someone was screwing a hot knife into them lol.
they have been bad all day.
also the top of my feet and my ankles hurt like hell.

i have an appointment with the musculoskeletal dr on 5th december so im hoping he can actually tell me for certain what it is.

susie
x

I've heard people saying about tramadol, it's not something that's ever been offered to me. I was taking co-proxamol but when they stopped manufacturing that i switched to codeine phospate and the doc suggested adding a paracetamol to it to make it essentially the same. It never quite relieves the pain though, but it does leave me so fuzzy that i often don't care lol. I'm also on voltarol (dicloflex) for my neck...which when I stop that my whole FM condition worsens.

The GP thought the Lyrica dose recommended in the guide book was way too high so she's started me on 25mg twice a day for now. I go back in two and half weeks and I'm assuming she'll increase the dose as it doesn't seem to be doing anything as yet and we stopped the dicloflex to enable us to monitor it.

Liz, it's also prescribed for anxiety, I think because it works on the CNS that's why it can have a few different functions. It's the pain aspect that I'm most interested in obviously because that's the main symptom that I have from the FM, that and insomnia (which it can apparently improve or make worse depending on your luck).

Thanks.

hi liz, do you think temporal lobe epilepsy is related at all, i was diagnosed with it 20 yrs ago, although havent had a absence for 2 years, now, i just absent all the time lol.

Summer Scribe, I take pregabolin and have done for over 3 years, I find it very good.
What dosage do you take?
Fortunately I can take tramadol, I cannot take co-codamol, they make me so sick.

Gillie XX

My friend in Germany is taking it.
Co incidentally it is also prescribed for temporal-lobe epilepsy, I saw when I was looking into the illness.
Good luck with it.
Lizx