Fibromyalgia...is there an MN support group?

[Becaroooo]

Just been dx. I am 39, married with 2 young dc.

GPs answer for my pain (had spd with my last pg and last year a herniated disc in my back) is to throw ADs at me which I do not feel are helpful and dont help me sleep anyway.

Just wondered if any of you have any tips/advice on how to deal with the pain without taking pain meds every day or if you have found any alternative therapies that helped?

TIA x

I was on 30 then put down to 20.

I was on 20mg of Ami then put down to 10mg but still left me feeling hungover every morning I hated it, but it was before I had dc so feeling spaced out was not as big an issue as now.

fab so sorry you have this to deal with too

I guess a pain clinic is the next thing....

Hi...can I join the party too? I was diagnosed with mixed connective tissue disorder a couple of months ago and then yesterday at the rheumy clinic they hit me with fibromyalgia as well
I'm already taking plaquenil and naproxen plus lansoprazole for the MCTD, and have been taking co-codamol at night to help me. sleep and for the breakthrough pain. Yesterday they hit quite a lot of the fibro tender points and said the breakthrough pain is probably down to fibro rather than the mctd.
I've been taking ADs for several years for ongoing MH problems and now they are talking about amitryptaline or something beginning with p, can't remember the name.
Feeling so despondent, as after suffering from various non specific ailments for years, the MCTD dx had given me some hope that they could get things under control as Icm very early in the disease process. Now this, with no cure and variable results in the way of pain management and drugs whose side effects are worse than the thing itself, all I can see is a life of pain and misery.
Sorry to hijack your thread becaroo I didn't mean to dissolve into self pity. Just been browsing some fibro support forums (fora?) and not seeing any light at the end of a very long dark tunnel.
Would be very interested to hear of any self help tips (other than lose the self pity )

daisy Are you me????

So much of your post resonates with me....I have MCTD too and am on lansoprazole and naproxen although I dont find the naproxen useful tbh. Rely on ibuprofen and co codamol atm.

I used amitriptyline for a while but didnt like the "spaced out" feeling in the morning and I have 2 young dc who think sleep is for the weak! so stopped taking it.

GP has suggested gabapentin, tramadol (not keen) and diazepam but they all seem a bit hard core IYSWIM and I think the longer I can stave off using them then the longer I can avoid all the side effects...

I know what you mean re: looking ahead....I try not to as I find it really depressing

Sorry to hear about your MCTD becaroo , but nice to know there's someone out there who knows what it's like. I'm struggling to separate the two conditions at the mo. I was advised to get more exercise, and as my pain Improves when i'm moving, I see the sense in this, but if I overdo things, the joint and muscle pains from the MCTD kick in. Trying to strike a balance is hard. My general pain, which I think Is from the fibro is all one sided; I feel that if I cut myself in two, threw away the right side and mirrored the left, all would be well with the world, barring a bit of sore hands and feet and a dodgy left shoulder (boy did I used to whinge about that; nowadays it barely registers!)
Last night I experienced the oddest thing as well...when I yawned, the muscle under my chin on the right side wen5 into some weird spasm and I couldn't move my jaw. It hurt like hell and is still oddly spacey feeling today. I have had a bad tummy for 10 days now so it might be cramps associated with that, but how odd. DH thinks me not being able to talk from a locked jaw is hysterical though ...wait till he realises what else I can't do
I read that the tummy issues may be connected? I've given up lactose to see if it helps, but I'm already gluten free as I was dx'd with coeliac disease 7 years ago. I'm starting to think I must really have pissed someone off In a previous life!!
I have 3 kids, two of them under 5, and feel like I'm letting them and my DH down. The house is a mess, I can't stand anyone touching me as my body screams in pain and I'm certainly not doing great in the wifely dept .

Have you tried physio/osteopathy/chiro? I had a bump in the car in the summer and I think this might have triggered the fibro as I haven't been right since then. It was such an insignificant bump too...bumped Into the car in front in pretty much standing traffic; couldn't have been doing more than 5mph!

My dad used to say he wanted someone to rub him out and draw him In again...I am beginning to see what he meant!!

oh daisy I can really empathise...my dc and dh are suffering because I am suffering and I hate it Poor dh - I wince every time he comes near me...

My ds2 (3) put 2 cushions on the sofa for me yesterday "for your bad back mummy" I dont want my dc growing up thinking they have to do things for me you know?

I had a herniated disc in my back in the summer and the fibro def seems to have kicked in since then.... I could barely walk! Am in constant pain and not sure what to do about it tbh.

Went to a chiropracter for 2 sessions 2 months ago but actually found it made things worse (?) but went an osteopath a couple of years ago (had spd in my last pg and my pelvis still isnt quite right) which did help so might give that a try again.....

Lots going on here atm - moving house in 2 weeks! - so any exercise regime will have to wait but have bought a Wii fit and plan to get going with pilates/yoga after xmas.

Weakly waves to Butterflyeffect. I had forgotten that you had fibro
Sounds like things are pretty full on for you becaroo. I hope you come through the house move relatively unscathed. Ikwym about the dc; my conversations with mine seem to be punctuated with "mummy's not well" My eldest, 9, is great though; he keeps me supplied with warmed up wheat bags! and helps with the little ones, getting them breakfast and drinks and snacks and even helping to get them dressed and Into their coats and shoes when I need It, but he can get quite resentful, which is understandable. School have been great though and have referred him to a charity for young caters so he ca n get some support.

How do folks cope with work? I was working as a carer since March which was really helping with the depression, but the MCTD put a stop to that in August, and I have been off sick since then. I would love to get back to it but. It was evening work (no daytime childcare) and was really wiping me out. I can't see me getting back to ot any time soon...falling asleep for four hours whilst in charge of toddlers is less than ideal! SSP will run out soon though and I don't know how we'll cope financially as we are barely keeping our heads above water now and I won't qualify for any benefits. If they go ahead with the child benefit thing we will be screwed as DH earns just over the proposed threshold.
I need. to dig out the Wii as well...though difficult to fit it in with my rowdy three year old trying to join in!
I read that yoga isn't good for fibro? How about plates? Or does holding the stretches make things worse?

I have been a sahm for 9 years now and was thinking of getting some pt work when ds2 goes to school - like you my dh earns just over the limit for CB so we will lose that soon and we dont get anything else (tax credits etc)

The osteo recommended pilates...I would just do the beginner version though! No high impact stuff for me!

My youngest will start nursery three days a week in January and I'm looking for pt office based work, but who is going to employ someone who is currently off sick from their existing job? Or who has a history of long term sickness? It's not as if jobs are ten a penny, or there Is a shortage of good candidates at the minute. And I have been out of my own profession so long that to go back to it would be a real uphill struggle. And Isn't a very family friendly sector anyway with part time jobs like hens teeth!
Can you get help looking for work if you aren't claiming any sort of benefit?

I am not sure...need to look into it myself but so much going on atm...cant see the wood for the trees atm!!!

I think get your move and Christmas out of the way first; you have enough to think about at the moment....and then new year, new start.
The number of years I've said that...this time I really need to mean it! The Rheumatologist was quite scathing about my weight yesterday which left me having a 20 minute talking to from the rheumy nurse about how to lose the four stone I've accumulated since having children. She really advocated Slimming World and does it herself.

I started WW last month but have only been twice what with dc being ill, me being ill etc. And 1st 2 weeks I lost nothing despite really sticking to it! Got a sneaking suspicion my thyroid is buggered too but one thing at a time, eh?

I think losing weight will def help in the long run......

I've never got on with WW, but it's more like SW now I think. A friend is an advocate of the harcombe diet which I'm trying to follow the basic principles of...basically don't mix fats and carbs. It seems to be working...or that might just be the chronic diarrhoea

Has anyone heard of The Lightning Process? It was developed by an osteopath and as far as I can understand is a form of CBT. There are books CDs/dvds and courses run by local practitioners but those are costly. It was recommended by a friend. If I can figure out how to do links on my phone I'll try and link.

I did the harcombe diet 2 years ago and it does work...I lost 1.5 stone in month!

Have heard of the LP...am very sceptical, however. No actual information on what happens/how it works. AFAIK its like CBT but more intensive.

Feel like poo this morning. The pain I've had for weeks on the right side of my ribs has started on the left as well. doc and rheumy say it's muscular, but it feels more internal iyswim. The diarrhoea I've had for nearly two weeks is taking its toll as well. Sooo fecking fed up with this
How is everyone else this morning?

Feel a bit better thanks....virus seems to be on its way out thank goodness.

Sorry you are feeling rubbish..it can be so unrelenting at times, doesnt it?

Sorry your having such a tough time ATM LackaDAISYcal

I am having a low pain spell ATM but it is hard not to do to much and spoil it.

Hello everyone,
I was diagnosed with fibro 2.5 years ago. The consultant rheumatologist was useless - "here's a leaflet, do some exercise". I was prescribed amitriptyline by my GP but only took it for less than two weeks as it left me feeling woolly - driving to work in the mornings was a nightmare. I was also diagnosed with an underactive thyroid last year and prescribed levothyroxine. I have to admit that my fibro symptoms have lessened since then, though my knees and neck still ache. I too have muscle twitches (sometimes feel like Inspector Closesu's boss ), and numbness and pin&needles in my arms and hands but all in I'm a lot better since my thyroid issue has been address.

Still tired though - fall asleep at the drop of a hat and two DCs don't help. I have a part-time job at local supermarket (evenings & weekends) and am just about managing it. But find juggling being a part-time SAHM, and part-time worker hard and so housework is suffering. DP thinks I'm lazy but I find it so hard to be organised and have the energy to do all the things I should be doing.

BTW, my GP said that the consultant would arrange a 1 year follow-up but haven't heard a dickey bird from him since April 2009.

Oh somewhere for me to live too :)

I've been diagnosed with Fibromyalgia since i was 19, so 8yrs ago, i haven't been able to work since i was 21, and since having DS at 24, i have had more off days than good, I walk with a crutch daily and sometimes walk with two.

I currently take gabapentin, 200mg x 3 times a day, and 20mg Amitriptyline at night, which is a lifesaver for me, i sleep well and wake up fine, plus a very healthy weight, so it hasn't caused weight gain for me.
I also take paracetamol, and Tramadol, but after todays experience of Tramadol NEVER again! So back to the doctors to see what i can take now, since the co-codamol range made me terribly constipated and i can't take anti-inflammatories because of Asthma and stomach problems!

Daily i struggle terribly mostly with the fact that i am this way for life...I was also diagnosed 4 years ago by a neurologist with Functional Weakness, and i have Plantar faciitis, pelvic distortion and Tarsal tunnel to boot!!

if Hello

Sounds very like my appt with the consultant! Got a lovely booklet which was no help at all and a prescription for amitriptyline which I had already told her I wasnt happy to take!

Sorry to hear you are having such a rough time of it. If you can manage it try and build up your exercise levels, even if it's a short walk round the block daily. Believe me when I say one of THE best things for fibromyalgia is to keep moving, it's hard to start again once you've stopped, but exercise (albeit gentle) is the absolute best thing you can do. It will hurt to start with but once you get past that you will reap the benefits.

It's what stops me going part time (I work full time although have lots of sick days). When I stop I end up incapacitated.

Also opiates are great for acute spells of pain but for general fibromyalgianess they are extremely poor.

I second the exercise thing. When you are really suffering, it feels really hard to believe that you could even manage to DO any, but if you do manage to get into the habit of regular exercise and keep moving as much as possible, it really does help.

Hello if and Lisa. Sorry to see you both hete, but happy that there is a support community here on MN (I tried a couple 9f other forums, but can't get to grips with them! Also found the info that 65 had read your post but there were only 3 replues quite demoralising!)

After a pretty rubbish weekend, I was back at the GP this morning who has started me on amitryptaline and sending me to a gastro to get to the bottom (arf) of the chronic diarrhoea. It cleared up with my last steroid injection and came back as it wore off so it looks like it might be inflammatory in nature. Yay, another health issue

After all day In pain on Saturday ribs burning, like a syich but unrelenting. I noticed a small lump over my ribs, size of a pea and pressing it made me howl out in pain. A quick prod of yhe other side, that has been hurtig in the same way for weeks, and there are more of these little lumps. Also a couple on my shin. I read something about these being part of fibro, but then came across stuff about dercums disease which scared me witless quite frankly (I know...step away from the google) Can anyone shed any light on tender lumps? Doc said lipoma, but they should be harmless and non painful and told me to monitor.
But, feeling in a more positive frame of mind today...managed to walk to pick the dc up this afternoon, and was out and abput a bit too. Not sure how the fibro is interacting with the MCTD though; I. Think getting the balance of activity vs pacing myself will be tricky.

Sorry some of you aren't getting good follow up care . I am in the early atages of my MCTD dx so at the rheumy clinic every 3 to 4 weeks.

Gentle hugs to all

Apple for random full stops, capitals and rubbish spelling. Typing on my teeny phone keyboard and it does random punctuation and the predictive text is a bastard. Then It locks up and won't let Mr ccorrect it. Blardy annoying but my laptop is in bits (mental note to self: just because self repair looks easy on YouTube doesn't mean it is!)
And I waffle a lot...sorry

Have you ever heard of Ehlers-Danlos Syndrome? Are you hypermobile? Those lumps can be a sign of it although I believe in EDS they tend to be painless. In the main it's a totally benign syndrome but fibromyalgia is one of the presenting symptoms.