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Original poster

OK,I admit it, I cannot cope well with this at all

27 replies

SevenSaltiresSwimming · 28/12/2009 15:50

There, I've said it. After years of tellling myself that I am not giving into my Fibromyalgia, I think I have to concede defeat..
I am hoping that the new Gps I shall see when we move will be a lot more helpful, as I ahve really more or less self treated yself for the 2 1/2 years we have been down here.
It's finally beating me. I spent 3 hours in bed on Christmas day because the fatigue jsut kicked in, and never actually got up until 12 noon on Saturday. Today we took a small wlak round a nearby village and after 15 minutes Is aid to DH "I can't go on, I am in so much pain", and the fatgiue is getting me down, I feel like I have concrete block tied to my legs which I have to drag round.
I've had 4 days off work (not through illness) and it's made me realise just how much of a struggle it is for me to go and do only 3 hours a day.
I have had teingling and numbness in the last 2 fingers of my left hand permantently for the past 6 months and periodically for aobut a year before that. Today i ahve numbness and tingling down my right arm, I ahv eno feeling in 2 fingers and my legs and feet are agony.
I keep getting blurred vision, and face pain and IBS flare ups. Its getting me down and I feel that I am going to have to give ina nd tell myself that I can't do the things I used to do. I cannot remember the alst time I ahd a good sleep (although that is 80% because of the feckin racket from next door)
I have no inclincation to do anything - I sit and look at the house and although it's not dirty, it is very untidy and we are moving in 5 weeks, I have so much crap but I don't have the physical energy or mental motivation to do it.

OP posts:
NomDePlume · 28/12/2009 15:52

are you not under a rheumatologist for it ?

NomDePlume · 28/12/2009 15:53

get your GP to refer you to a Rheumatologist if you are struggling this much.

tribpot · 28/12/2009 16:14

Saltire, I think it's a combination of the time of year, sleep deprivation and a flare-up. Plus you're facing the prospect of moving. I'm healthy and I'd be ten times worse than you in your shoes.

So. Practical steps. Are your removal firm doing the packing? If not, please consider this, it's a life-saver and a sanity-saver too.

Sleep. Can you get away somewhere, even for one night, to try and get a decent bit of kip? I don't know what's going on next door, can they be reasoned with?

The numbness and tingling probably warrant further investigation, but best to wait until you've moved as you say. Worth getting a referral to the chronic fatigue service as well?

You know better than I do that with these syndromes it's important to balance pragmatism with ambition. Recognise that you may not be able to do everything you used to be able to do (particularly during flare-ups) versus don't give up and stop doing things that you can do if you're careful. A 15 min walk is good. If outside is difficult in the cold, how about 15 mins indoors?

I'm channeling Kate Bush and Peter Gabriel now: "don't give up". And don't beat yourself up, either. Yes it's hard, and if you need some downtime take it. It doesn't have to be a defeat, just a tactical withdrawal ...

purplepeony · 28/12/2009 16:28

Have you heard of the UK support group for the guai treatment?
It is a bit alternative but I have a very sane friend who swears by it.
Not sure of the website but if you google Uk guai support group you will find it.

alypaly · 28/12/2009 18:57

SSS when i got chronic fibromyalgia after contracting chronic parvo virus(slapped cheek),my rheumatologist,(who i will love forever) gave me a weeks transfusion of immunoglobulins and it sorted out three years of total exhaustion within 10 days of having it. I had immunoglobulins for 5 days as an in patient and it got rid of the fibromyalgia,fatigue,lethargy,loss of appetite and i felt like a differnt person. Funnily enough i have not had a cold since the transfusion either.

you can get tingling in your arms and fingers with the related anxiety and it is really worrying for you when it goes on for so long.
do you feel that you start one bit of tidying and never finish it,move on to another room and so on but never complete anything?

Original poster
SevenSaltiresSwimming · 28/12/2009 20:48

I sw a rheumatolgist when we lived in Fife and she diagnosed me. Then, in 2007 I saw a pain clinic consulatant down here. He decided that because I occasionally got headaches, that the pain I ahve all the time must be cmoing from stress related headaches - which would be good theory but I ahd headaches maybe once a fortnight, yet had/have pain 24 hours a day every day.

Then I got referred to the pain manangement clinic which had a 2 year waiting list.

my own gp has been nothing short of useless, telling me at one point that if I was as bad as I say I am then my mum should buy a house down here to look after me. They stopped issuing me with painkiller, and despite me asking them for other ones they won't give me anything stronger than ibuprofen and paracetamol. The only reason I get co-codamol is because I tell them it's for ym bad back (I hurt it in the summer and was off work for 5 weeks)

OP posts:
Jux · 28/12/2009 21:03

I have ms and am like you most of the time. I have been given pregabalin for the pain which is pretty good and it's what pain clinics tend to offer (I understand). You could just tell your gp that you want it and ask him/her to explain why you can't have it if he/she refuses.

I also take dosulepin, an anti-depressant which, if taken in very low doses acts on neural pain; and I also take co-dydramol (slightly stronger than co-codamol I think?). My gp told me that there are many a-ds which act as pain suppressants in low dosages, so I'd get along and make a few demands, in your shoes.

I'm so sorry you are getting so little help with your condition. It's outrageous in this day and age.

Original poster
SevenSaltiresSwimming · 28/12/2009 21:12

Sorry, I should have said I take 20 mg of Amitryptiline at night, which is an AD. Been taking it since 2006 though and it's never been reviewed by anyone

OP posts:
noddyholder · 28/12/2009 21:15

Have you had your b12 levels checked?

herbietea · 28/12/2009 21:18

This reply has been deleted

Message withdrawn

alypaly · 28/12/2009 21:21

SSS the amitriptyline is used as an Ad and as a pain killer...its supposed to help both...that can give you blurry vision.
Gabapentin and pregabalin are really good.

Did you develop this after any viral illness

sanfairyann · 28/12/2009 21:22

double check the diagnosis. know someone who suffered from this for 10 years then found out it was something different, treated with high dose steroids and completely cured within weeks. gutting about the 10 years of pain but at least she found out. was a change of GP and a new interest in her case

alypaly · 28/12/2009 21:23

SSS my rheumatologist in manchester is brilliant.he take fibromyalgia really seriously and no matter where you are ,you can get referred to whoever you want. His name is Ian Bruce

RumourOfAHurricane · 28/12/2009 21:25

This reply has been deleted

Message withdrawn

Original poster
SevenSaltiresSwimming · 28/12/2009 21:29

I've had this on and off since I was 19, although I got similar pains as a child and was told they were growing pains. There has been nothing that triggered it off, and there is no trigger to the flare ups - I ahve certainly been very stressed but have had an ongoing flare up since about June.
I am hoping that a move and new GPs will help. I did get a lot fo help with it in Fife (under the care of military doctors)

OP posts:
FiveSoloRings · 28/12/2009 21:37

If I had the money, I'd do this...maybe if you can afford it, it may help you Saltire?

here

alypaly · 28/12/2009 21:39

honestly.i firmly believe 100% in this immunoglobulin treatment...i felt as tho i was on my way out before i had it. couldnt do anything,soooo tired...apathetic,....

did you ever have glandular fever?

have they tested your IgG and IgM

Jux · 28/12/2009 21:42

I used to take amitriptyline, but I had to keep increasing the dose. When it got to the point where it would start acting as an ad they put me on to dosulepin (aka dothiapin) and I've been on it for years now.

I used to take gabapentin, but it sent me to sleep all the time.

The pregabalin is pretty good; you start on a very low dose and increase it every few days. I would be a bit weird for a day and a half - spaced out really - and then fine with minimal pain for a day and a half, then double the dose and get a bit weird again etc etc. I am on 300mg a day now and have been for quite some time. Could do with increasing the dose and would have talked to gp about it months ago, but events in the last few months have got in the way. Will talk to him in the new year though.

I really do recommend it. A friend with ms has just started taking it and she says she hasn't had any side effects at all. She wants to get spaced out for a bit, but it's not happening!

It's really worth being very forthright and firm with a gp who isn't helping much, and making explicit requests.

alypaly · 28/12/2009 21:49

pregabalin gave me double vision initially

tribpot · 29/12/2009 18:21

saltire, sorry, I thought you were further on in your diagnosis journey than you. DH is on amitriptyline and pregabalin (and gabapentin, although I can't remember which of which he's on now).

DH also had the growing pains thing. I wouldn't bet the farm on your new GPs being any better, to be brutally honest.

Tramadol's an interesting one.It's the only thing that's ever stopped DH's snoring, I literally can remember the morning we woke up in bed together, it's happened once in five years. Then the hospital pharmacist had to be a killjoy and point out taking tramadol and amitriptyline together can cause psychosis. I said it was a small price to pay but they wouldn't believe me!

FiveSoloRings · 30/12/2009 21:19

I used to be on Sertraline(Lustral)for the tingling and numbness. It did help for a while and then it seemed to stop working, so I just stopped taking it...Big mistake; huge. I forgot that it was an anti depressant and had no idea that it was buoying me up as I hadn't been depressed before taking it and I plummeted to the floor
I've taken nothing since. Personaly, I prefer to try to self manage the whole thing.

Saltire · 04/01/2010 08:12

Have really struggled over the weekend. I was in tears on Friday night with the pain - it was so bad that I was starting to feel sick.
I am so tired, yesterday all I did was vacum the living room and hall and tidy the shoes up and I was laid on the sofa for 3 hours to recover. I am back to work tomorrow, only have 2 more weeks left. On Thursday night some people were suggesting to me that I give up work when I move and start claiming DLA - but I don't consider myself to be disabled, also I don't really think I fit the criteria

giraffesCanDanceAtHogmanay · 04/01/2010 08:18

Morning saltire. Where are you moving to? I have no advice really but have read your post and wanted to add some support. I had some sort of post viral thing last year, thankfully it went away but I will never forget what that was like, and was so difficult to explain to anyone how I felt. I know its not the same but some of what you are sayin touched a wee nerve. I was off work for a while and ended up giving up my 2nd job and just doing 3.5 days when I went back. How much do you work? Could CAB help on criteria for DLA if thas something you wanted to look at?

tribpot · 04/01/2010 08:23

Saltire, sorry to hear you've had a bad weekend. It's important to pace yourself, don't feel bad if you have to ditch the cleaning when you're feeling bad.

It's really important I think to avoid getting on the Good Ole Painkiller Express, which had left my dh on morphine for 18 months with fairly appalling side effects and now on a huge cocktail of drugs, which aren't working, and the only advice from the pain team is to stop taking them. Mmm, thanks for that.

When your pain is bad, can you take some time out to do some self-hypnosis? Have you looked at the Fibromyalgia UK website?

Saltire · 04/01/2010 08:30

trib - yes I have, I joined their forum, but found it's not as fast paced as here, and OPs can get a few to get answered, so I don't go on there much.

giraffes - I currently do 3 hours a day, 5 days a week. I am on my feet for most of it, and when i get home all I want to do is collapse in a heap, but I can't because I ahve to get dinner done, dog out etc.
I just find everythign such an effort . I used to childmind and could handle it as if I was having a bad day we would all sit around doing art, or reading stories, and I got 2-3 hours off in the afternoon when the children were sleeping or at nursery.
DH thinks I should go back to minding part time (maybe just one or 2 childrena fter school) when we move.
Off to Yorkshire bTW

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