Me, fibro, Lignocaine infusion and benefits. Post 2: the treatment

[Guest guest]

I am admitted for a week every 3-4 months (the usual regime is every

6 months); usually when I go in I am wheelchair to bed-bound, with

the pain untreatable by all the MST I can swallow. You all know what

I mean. They do a baseline ECG and blood work. They do a nasal swab

to check for MRSA. I am then admitted to a 4 bed ward- the norm here

is a 6 bed ward, but the rheumatology/ pain management unit has

smaller wards.

The ECG is done to rule out any cardiac dysrhythmia as the drug

being infused can alter the heartbeat. It's use in cardiac medicine

is to raise the threshold of the cells to electrical impulse- so too

low a heartbeat + lidocaine can mean an even lower heartbeart.

On the first day, they put in the IV cannula, and from that moment,

you are bed bound absolutely during infusions and it is recommended

in the evening. Not like you want to move anyway... then they start

the infusion, and put you on a monitor that takes your blood pressure

(every 15 minutes or hour), respiratory rate and heart rate

(constant). To go to the loo (toilet) you have to call and they take

you in a wheelchair. But they answer right away.

Day 2-4, more lidocaine, doctor's check, etc. By day 5, I am usually

antsy to get moving. The pain by nw has started to abate and my meds

are cut back. I start creeping out in the evening and walking down to

the day room. It takes me a while, but I can do it.

By day 5, I am feeling much better. the " backpack " pain will be gone,

my hands don't wake up cramped, the energy is returning, I feel

myself more than ever. Day 6, last day of infusion, I get up and make

all the beds in the room. I want to move. I have gone from using a

wheelchair for mobility to using one stick. I have energy... I can

sleep... life is back.

Day 7, go home, clean house, clean house, make up for lost time. Feel

human again. Read emails from FSG_ feel bad more people don;t have

access to this life-restoring treatment.

Now, it's been 2 months since my last treatment. I am due to go for a

treatment in another month. I am starting to have pain at night that

wakes me up. I am starting to lose energy, and the back pain is

coming back every now and then- soon it will be constant. Was off all

pain meds except the patch and pregabalin (lyrica) at a lwoer dose,

am now back on MST, codeine and oramorph. IN a couple of weeks I will

be back on two crutches and wheelchair. BUT by then I will be waiting

to be admitted, so the pain is tempered by hope that soon it will be

all better.

I see the pain specialist nurse every other month; see the GP

every two weeks or more often when needed, the pain consultant when

he wanders in during my hospital stays- he is a wonderful, gentle and

loving man who has pain in his face when you describe how you feel-

he researched this treatment and developed the programme under which

it is delivered. He is a god, in my opinion, and so many others

(don't confuse this with THE God..., there is a difference, big

time!)- but he is selfless, devoted, loving, caring and gentle- when

he examines you, his touch is light and he tries so hard not to cause

pain. When he speaks to the junior doctors, he tells them to listen

to patients, to be compassionate, to take their word for what they

feel and never to doubt the severity, frequency or nature of pain. He

tells them not to feel bad for " us " , but to take our pain to heart

and do everything they can for us, as believing in us and what we say

is the most important thing... I wish I could send so many of you one

of these compassionate and " believing " doctors.

SO that's lignocaine treatment. There are outpatient treatments, but

I think its the medication, combined with the rest, and the love,

that makes it work. Here are links to the information about the

treatment:

http://www.biomedcentral.com/1471-2474/3/21

http://rheumatology.oxfordjournals.org/cgi/content/full/42/1/185

this is a link to Dr. Raphael's research:

http://lib.bioinfo.pl/auth:Raphael,JH

Maybe those of you who have receptive doctors can talk them into

trying a course of this therapy, or maybe there is therapy available

to you. Luckily for me, the NHS means this is free for me, but I

suspect it's an expensive treatment. Sorry for the long post, but if

you average it out over how often I post, it's not too bad ...

If you need further info, want to ask me anything, etc, or if you are

in UK and want further links and info, my email is bethannUK AT

blueyonder DOT co DOT uk: if you but Fibro in the subject, I will

read the email and respond if necessary. Nastygrams will be forwarded

to the ISP provider and posted here. You don't have to like me- but

just as I respect each of you for your opinions, please extend the

same to me. Just because I don't always agree doesn't mean I don't

care.

Thanks- hope this helps someone

Bethann

[Guest guest]

Bethann - I'm so glad you are back! Thanks for all the information

you were able to put together. Unfortunately I don't believe we have

anything comparable, please keep us posted throughout your sessions.

Margaret B

> I am admitted for a week every 3-4 months (the usual regime is every

> 6 months); usually when I go in I am wheelchair to bed-bound, with

> the pain untreatable by all the MST I can swallow. You all know what

> I mean. They do a baseline ECG and blood work. They do a nasal swab

> to check for MRSA. I am then admitted to a 4 bed ward- the norm here

> is a 6 bed ward, but the rheumatology/ pain management unit has

> smaller wards.

>

>