What can I use for pain relief when everything seems to have failed?

[ladytelita]

Although I have only had fibro for a short time I'm finding the pain levels truly unpleasant some days. I am sure it is worse right now because I have the children home; hoping it will get easier when they are back at school and college. Right now I only take Nortriptyline at night and paracetamol when desperate (which isn't all that effective as it is). The problem is the Nortriptyline isn't helping me sleep (it takes ages to get to sleep and I generally wake up 5-6 hours later) like it did at the start and it doesn't do anything for the pain. I can't take too many paracetamol because I get bunged up and headachy and ibuprofen affects my asthma horribly so definitely a no no. I did try codiene but that was like the paracetamol, only quicker and worse. *sigh*

I know I am pushing things currently, yet I still seem to spend a lot of time lying around or in bed and even that hurts sometimes.

I've now got the urinary tract problems under control, despite recurring cystitis and antibiotics as a result as I found a rather useful, if expensive suppliment tablet which stops the major discomfort hitting even when an infection hits (it's called Cysticleen, basically made from cranberry and it has something else in it....works for me). I also take a multi-vitamin daily since some of my levels were a little low when they were last checked.

Does anyone have any ideas of what I could take? The docs seem at a loss as to what I can use that won't have a negative effect on either my asthma or the rest of me.

P.

[Ermintrude75]

Hi

You said youve been over doing it lately so the first thing I would say is STOP. I have to do it sometimes when Ive over done it. The housework will be there tomorrow. Go speak to your doctor or another there is a number of different medications out there, Nortriptyline, Amitryptyline, Gabapentin, Pregablin there are probably more that I have not heard of. We are all different so what works for one may not work for another. There are also other things like heat pads or a hot bath/shower that can help and things like Chamomile tea to help relax. These have helped me.

Personally, I was on Gabapentin but I became so fatigued that I was struggling to do everyday things. So now I am back on the amitryptaline which does help me sleep, along with 30/500 Co codamol and naproxen (its ibuprofen based) for when things get really. I also take a multivitamin every day and find 1000mg of vitiman C helps when your bunged up.

Hope you get some relief soon

[ladytelita in reply to Ermintrude75]

Thanks, the amitriptyline had a horrible effect on me so couldn't take it. Not tried the other two. Our bath is a little small, even for me at 5ft 4, so not very relaxing and definitely not something I can sit in for very long, it's just not comfortable.

I have tried the the co-codamol but that's only effective when I use it once in a day and not prolonged, so not useful when things get tough, like they are now. I really need a less fussy body!

P.

[Hidden]

I think we would all like the answer to that question

I don't think anything takes it away completley, you

Just have to hope it takes the edge off the pain.

But what ever the medication your body soon gets

Used to it and we have to try some thing else.

Pregablin is a very good drug if used correctly,

Unfortunatley you do get weight gain with this medication

But it's very good for pain.

[Hidden]

The trouble is with pregablin is that's it is expensive

And doctors don't like to give it.

Ask to be referred to a pain consultant in your

Hospital

[ladytelita in reply to Hidden]

Lol, the idea of weight gain doesn't appeal, especially since I can't exercise like I used to. But I would like to be rid of the pain....that would lead to better sleep I'm sure. *sigh*

I just had my mother ranting down the phone at me about over-doing it, but I don't think she really gets it, although she has ME herself. It's not useful that I have the patience of....well, something not very patient and don't like not having an answer now. I think you're right, I will ask to be referred to a pain clinic or some such.

P.

[Hidden]

HI, not sure if it is of any help to you, but I too am having pain management problems at the moment.

I am on Lyrica (pregabalin), since May (put on it by the The Rheumatologist) but it isn't working to relieve pain for me, I am also on Keral (ant-inflammatory) not helping,tried Amitriptyline it helped me sleep but did nothing for pain, Paracetamol doesn't relieve it in the slightest, Co codamol helps but GP doesn't recommend it for everyday use and it makes me very constipated.

I went to see my GP last week to discuss pain management with him before I see the Rheumatologist this week, anyway GP said to see what Rheumatologist says but he told me there is a lot more we can try and it's a bit of trial and error to see what will work as everyone id different, it gave me a little hope, it may give you some to...

I would also like to attend a pain management clinic and see if it helps.

I hope you find something that helps soon xx

[jom277]

I definitely think you need a referral either to pain management or a rheumatologist. You say your pain levels have gotten really bad and nothing is relieving this. Is it muscle pain, do you have myofascial pain aswell as Fibro, like me.

I take Pregabalin (recommended by rheumatologist); Diazepam at night; Tramadol and co-codamol (I swap between these two every 6 to 8 weeks). I also take Venaflaxine an anti-depressent. The rheumatologist recommended that I take Duloxetine but this didn't agree with me.

I had gone through pain management prior to this and had acupuncture and trigger point injections.

I hope you get your pain levels sorted soon. You shouldn't suffer in silence, especially with children at home.

Jo

[ladytelita in reply to jom277]

I have a referral to a R.A coming up at the end of this month, will try for the pain clinic too.

My normal gp is away at the moment, so I haven't seen anyone in a few weeks since the last tests.

I had a lovely day out yesterday which, unfortunately, consisted of me sitting in the middle of the back of my parents car (longer drives hurt my hands and wrists so I avoid them and since we were all going....).

Did a bit of walking and swimming so thoroughly exhausted today. Woken up feeling light headed again; just opening my eyes felt like hurt work. Not suprising after yesterday.

I do push myself to do as much as possible, I'm afraid of becoming housebound and/or never being able to do all the things I love. I will suffer for yesterday for a few days but the kids are back at school Thursday so will keep going til then. I'm sure most parents are the same during the holidays. I push myself so hard because this is still so new and the kids have grown up with me doing absolutely masses of activities with them and driving great distances, sometimes, to do them! Before we moved to Cornwall we'd have day trips to Durdle Door in Dorset (actually we did that from Cornwall too but not in the last year). I would get them up real early and we'd drive there from Cambridge, spend the day and go home that night. We'd go in to London for days out or drive to Hemel for the swimming pool there and the beach we frequented was 88 miles away one way.

I think what I'm trying to get at is the complete change this illness has brought about. The fact that it's only been around 3 months since it kicked in and the suddeness of the onset from such high levels of activity to struggling to have a day out without suffering for it after....even whilst doing it. I felt so rough walking back to the car yesterday I wanted to sob but didn't want the kids or my parents to see that.

How do any of us adjust to this? That anyone could ever concieve of this being 'all in our heads' simply doesn't compute. It's about time the underlying cause of CFS, ME and Fibro was found so we can get back to living full, decent lives. I just thank the Lord and Lady that I don't have to hold down a full time job like I know several do on here. That so many are turned down for disability is absurd. I'd like all those atos people to try living with this condition for themselves, see exactly what it feels like to have your life ripped away from you at the drop of a hat and still be expected to carry on simply because on the outside, we look 'normal'.

Argh, I feel totally in rant mode. I apologise, I shall stop now.

P.

[heathermac]

hi ladytelita was just wondering if u have tried a tens machine yet? my sister who also has fibro got one for herself and one for me off amazon for £10 each i haven't needed to use mine yet (waiting for winter).

But she says it helps her! i have been using a pain pen which helps for smaller areas also got from amazon can't remember how much as i got it a while ago!

[ladytelita in reply to heathermac]

Hi heathermac, no I've not tried a tens, isn't it fairly localised? I never used one for the children either so really have no idea. It is certainly a thought since it might help with the shoulders, arms and wrists? I think my Mum had something similar years ago for her hip.

P.

[Brightside]

Hi there

I was diagnosed with fibro a couple of years ago. The rheumatologist prescribed duloxetine, which works well for me. He also tested my Vitamin D level, which was very low. I take Vitamin D3 every day now. I rarely have flare-ups since starting this drug regime.

Good luck

CJ