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feeling a bit silly now

(15 Posts)
gallifrey Tue 04-Sep-12 20:59:30

I have fibromyalgia and since being on amitriptyline have been feeling fantastic, almost back to normal!!
I have even started running and have completed the NHS couch to 5k in about 5 months so now I can run for 30 mins non stop (not very fast though, I average about 6 kph which is 3 k in 30 mins!)
I also take cocodamol and ibuprofen but decided to come off them, then I stupidly decided to stop taking the amitriptyline too. I have been getting a lot of side effects, like itching skin and stomach pains.
I was fine for about 3 weeks but now feel bloody terrible, my arms and legs are aching and feel so heavy. I've been getting sharp shooting pains in my legs, and I can't sleep even though I feel exhausted.

Had to stop running too sad

Looks like I'll be going to the doctors then to get another prescription.

weegiemum Sun 09-Sep-12 16:59:36

That's exactly what I get if I stop the amitryptaline! I take it for CIDP, a Demyelinating polyneuropathy, which has the joint effect of making my extremities numb, but also giving me intense burning and shooting pains as well. Way to go having burning pain in my numb feet, I wouldn't have thought it was possible! I had to titrate up my dose of ami and am now stable on 100mg/day, but I know right away if I forget it, the next day is a nightmare!

Hope you get it sorted soon. Have you tried any other things? I tried gabapentin but it turned me into a total zombie! I've heard acupuncture is good but haven't tried it yet.

gallifrey Sun 09-Sep-12 17:35:47

Hiya, I also had GBS a few years ago and then was diagnosed with fibro about 6 months after.

I haven't tried anything else I was just given a prescription for the amitriptyline and started taking it!
I am definitely going to the docs this week, I feel worse than ever now, everything is such an effort even washing my hair in the shower was making my arms ache sad

Thanks for replying weegiemum, how are you feeling now? xx

weegiemum Sun 09-Sep-12 21:01:36

I'm feeling pretty weak and wobbly right now. I get 4-weekly IV immunoglobulins and I'm due this week, and I can really feel the need for it. Do they think your fibro is linked to the GBS (which is what they thought I had once. There's at least one lady I've met on the Neuro ward who gets IVIg for fibromyalgia.

CMOTDibbler Mon 10-Sep-12 09:25:18

I can certainly recommend acupuncture - when my nerve pain was so bad I really would have cut my own arm off (not trite, I mean it) the physio gave acupuncture a try for me, and it was bloomin amazing. Didn't take it away long term, but the relief was marvellous. But it did work long term on my tennis elbow/nerve entrapment on the other arm.

Am thinking about trying ami for my CRPS - have you two had any side effects ? Gaba gave me terrible nausea

gallifrey Mon 10-Sep-12 09:28:12

I don't think it's linked tbh, they suspected I had fibro before I had GBS but it was only after having GBS that my appt with a rheumatologist came through and I was diagnosed. I was given a prescription for the amitriptyline and left to get on with it!
I have started to feel loads better just being on that and the painkillers, until I stupidly decided to stop taking them! I have been getting some other symptoms which I thought were side effects of the medication that I was on, but am still getting them even though I haven't taken anything.

weegiemum Mon 10-Sep-12 15:31:47

Only side effect from ami I've had is tiredness, I had to titrate the dose up pretty slowly but when it works it's great! But then I'm tired so much of the time anyway that I couldn't wholly blame it on the medication. I also have tramadol for breakthrough pain, but that makes me zombieuish too!

Best thing for me though is the IVIg drip. Roll on Thursday when I can get it again.

CMOTDibbler Mon 10-Sep-12 15:48:49

I'm perma tired too - I think its the chronic pain and that I never sleep properly these days even on tramadol.

Thursday is botox day for me at neurology - tis brilliant, and not before time as the muscle tightness and joint sublaxtion is a pita

gallifrey Mon 10-Sep-12 23:36:49

I really am going to have to go to the doctors and ask for some proper treatment I think!
Fed up with living like this, I have no motivation and spend most of the time sitting on the sofa.
We rarely go out anywhere, my dh is a runner and likes going for walks on the downs which I can't do. And my daughter doesn't like me going in my wheelchair anywhere so I try and just struggle on.
I don't think they realise how terrible I feel most of the time because I never say anything.

weegiemum Tue 11-Sep-12 12:59:04

I never say much either, and then last night turned into a wailing banshee at dh at about 9 o'clock cos he looked at me and said "I hate seeing you in pain, in wish there was something I could do for you!" (he really struggles with this, he's a doctor and I know waiting for appointments eg for the pain clinic to come through really annoys him as he knows what he would do ...).

I lost it (I felt like I had a blowtorch on my feet and was holding a casserole dish fresh from the oven with no oven gloves on!!) and totally wrongly accused him of making it all about him, screeched so much ds woke up (this is a miracle in itself) and ended up a sobbing heap as he held me and apologised over and over.....

Oh crap I'm crying about it again now. I hate being disabled. I mean I'm very grateful for my nice blue badge and high rate mobility DLA, bbut I just wish I didn't need them. I got the DLA without even a medical - just how screwed am I? I have a clinical psychologist I see once a month and we've been over this again and again. CIDP can be very like ms, either relapsing remitting or with slow degeneration. I've got the chronic debilitating one. There's a fairly clear track ahead: in 10 years 2/3 of succeeded are in a wheelchair permanently. It can affect your voice, vision, eventually breathing. Right now I've no sensation to speak of from the waist down. I go to the loo by the clock!

Sorry this thread wasn't supposed to be about me and my issues. But I do feel a little better for "telling" someone how I'm feeling, even if you are Internet sprites!!

CMOTDibbler Tue 11-Sep-12 13:47:52

Oh Weegie, have a very gentle hug from me.

weegiemum Tue 11-Sep-12 16:30:21

Thanks CMOT <wipes eyes, sniffs>

gallifrey Tue 11-Sep-12 16:51:07

Oh bless you, isn't it crap sad

I remember breaking down crying and saying that I hated my life a few months ago. I was so upset, everything I lived for was gone, I had nothing and my fucker of a husband literally did nothing to help me at all.
I will never forget I came home from hospital and my house was so dirty that I got the hoover out and was hoovering from my bloody wheelchair while my dh and my bloody mother just sat there and watched me.
All I wanted him to say was I'll do that for you darling, but no I had to actually ask him if I needed anything doing at all, anything.
Still annoys me even now! Then when I said this to him and told him I was really ill, he just said yeah and don't we know it!
He's not normally like that btw, but I didn't get anywhere near the level of support from him that I expected from a husband.

anyway sorry weegie, I really hope you get some relief soon. Please feel free to chat anytime you want, huge hugs xxx

weegiemum Tue 11-Sep-12 18:53:49

One thing I have is an amazing husband. When I was so ill in hospital in January, my dad asked dh how he was coping. Dh just said "well I promised "in sickness and in health"".
When I've been very disabled (my treatment is once a month, and the effects wear off the closer my next admission comes) he's done literally everything for me. With no complaints, just love and care. Poor thing has actually ended up quite depressed himself and he's on a fortnights sick leave. Today he has cooked and cleaned and unpacked some boxes from our move 4 months ago and done everything with the kids including trip to the dentist.
It's just this never-ending future of disability stretching out in front of me. And when I'd worked so hard to get over my own depression!
I'm going to stop whinging on now. Sorry again sad

gallifrey Tue 11-Sep-12 21:05:32

No need to apologise at all, you are not whinging xxx

I shouldn't complain about dh really, in all fairness he works really hard, drives about 1000 miles a week and helps out as much as he can. He did most/all the cooking and just because he didn't do a bit of housework I'm moaning!!
I think the shock of me going from someone with a horse, a job and looking after our daughter to lying in a hospital bed paralysed from the chest down and in a neurological unit really got to him.
I think he was trying to be strong, but he phoned my mum up in tears one night to get her to come over (she lives abroad)

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