Author Topic: Fibromyalgia  (Read 250 times)

bub1

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Fibromyalgia
« on: June 07, 2018, 07:40:01 PM »
Has anyone on here got this?
How have you dealt with it?
I have just been diagnosed with it I have been given tablets amitriptyline 10mg daily in the evening but as yet they have not helped
Anything else I can try?

auntieCtheM

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Re: Fibromyalgia
« Reply #1 on: June 07, 2018, 07:49:14 PM »
Oh Bub, join the club.  All I can suggest is to go with the flow.  There seem to be over 100 symptoms and not everyone gets all of them.  Amitriptyline is a standard painkiller pill that they give you.  Do you need help to sleep, 'cos some people report that it helps a lot with sleeplessness.

For the pain some people also take CBD oil.  I have not tried this myself.  There is a facebook group that discuss this.

bub1

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Re: Fibromyalgia
« Reply #2 on: June 07, 2018, 07:57:13 PM »
Donít sleep much and they havenít helped.
If I take any more medication people will hear me coming 😂

ally

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Re: Fibromyalgia
« Reply #3 on: June 07, 2018, 08:56:32 PM »
I haven't got fibro. However, I take Amitriptyline. I think 10 mg is a very low doseage.  I'm on 40 mg.  however, the GP wanted me to up it to 70 mg.  I would go back to the GP, explain it isn't helping, and, ask to up it, if you can.  The side affects of Amit are a dry mouth, and, it can make you very spaced out,or tired.  Also, due to it being a sedative, it can make your tongue go numb, unless you swallow it straight away.  If you're in pain, then, Id suggest another med alongside the amitryptyline.  As aunty said, here's a few on forums who've tried CBD oil.  However, the GP will not prescribe it, and, it's expensive.  My friend tried it, but. Stopped, as she didn't think it helped.  As usual, what  helps one person, may not help another.  What other meds, if any, are you.taking now?   If I were you I'd go back to the GP

Fiz

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Re: Fibromyalgia
« Reply #4 on: June 08, 2018, 07:17:50 AM »
Amitriptyline is an excellent neuropathic pain killer. The dose for neuropathic pain is 10mg-50mg so you are currently on the lowest dose possible. Most people don't feel beneficial affect below 30mg to be honest so hopefully your dose will be increased. In the first few weeks some people can feel "knocked out" by it hence moving up doses slowly. If you're not feeling that though do ask your doctor if you can increase your dose. It takes a minimum of 3 weeks following each dose increase to begin to feel the effect of it but I do think you'd need to be on 30mg for a few weeks to know if it's helpful.

I'm on 30mg for the neuropathic pain in my back and it's definitely helped. I really wish that my GP would allow me to increase the dose to 50mg which is the top (licenced) dose for neuropathic pain because I've felt improvement from the 30mg so logic tells me my pain would reduce further if I increased to 50mg but my GP won't prescribe me a higher dose as it's dangerous in overdose and I'm too high a risk. I hear what she's saying and she's making an understandable professional decision but I'd love to be notified less pain than I'm in!

Some doctors will prescribe higher than the licenced dosage. My niece takes 70mg to prevent migraines.

As an antidepressant the licenced dosage is 75mg-150mg but psychiatrists will sometimes increase the dose to 225mg but not often.

It's worth persevering with it but I'd ask to increase to 30mg and see if it's helpful.

ally

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Re: Fibromyalgia
« Reply #5 on: June 08, 2018, 08:59:16 AM »
Fizz, bub1 why not ask to be referred to a pain clinic.  They'll look at your meds, and adjust, or, increase as they see appropiate.  They'll also introduce new meds if they think it'll be beneficial.  It was through my pain clinic that I was referred for a spinal cord stimulator.  I'm not suggesting it would help either of you, as you're only allowed one through a strict criteria, and NICE guidelines,  However, I was also offered physio, acupuncture, CBT, and, other treatment.  It may be worth asking your GP to be referred, if you haven't already done so. It was also the pain clinic that wanted me to increase the Amit to 70 mg.

Fiz

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Re: Fibromyalgia
« Reply #6 on: June 08, 2018, 09:30:17 AM »
My spine consultant referred me to the pain clinic after he discharged me having said there was no surgical option or injections that could help me. Unfortunately the pain clinic is a fair bus ride away so I couldn't access it because the way buses manoeuvre causes me intense pain so was in too much pain to be able to gain access to the clinic  >doh<

But there's now a car on the horizon so once that arrives, I may well ask my GP to re refer me. My patch dosage has been raised again this week so I'm hoping that is going to be helpful in the meantime.

ally

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Re: Fibromyalgia
« Reply #7 on: June 08, 2018, 09:59:05 AM »
Fizz what is wrong with your spine?  Prolapsed discs, special stenosis, OA?  Have you had surgery?  So far,  I've had 6 spinal interventions.  Steroid, and, nerve block injections.  It wasn't until I had FBS due to the above, and, the scar tissue was wrapped around, and squeezing the nerves, that I was offered a spinal cord stimulator.  It failed in December, and, I needed a new system.  From when it failed until the surgery I was back to severe leg pain.  The SCS is more successful with leg pain than back pain. However, the new nevro, a silent SCS now works on back pain.  I'm unsure you'd be suitable due to your mh issues.  You need to get through the  CBT and psychology assessment to see if you could cope with one,  before they offer you a trial.  it's an incredibly expensive procedure. The hospital needs funding for the patient before going ahead.  For me, it's worth having, it's not a cure, but, it helps.  Just a thought if nothing else works for you.

bub1

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Re: Fibromyalgia
« Reply #8 on: June 09, 2018, 02:14:25 PM »
I will have a word with my consultant on Monday. As I need to see him about my spine trapping all my nerves and injections havenít worked I donít really want surgery so will ask him about pain clinic. Y crutches I got from the hospital are so uncomfortable and the cuff irritates my arm so I brought some open cuff ones which are a lot better when I had my first hip replacement they gave me sticks which I fell over with so they were replaced with crutches.

Fiz

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Re: Fibromyalgia
« Reply #9 on: June 09, 2018, 04:48:26 PM »
Ally, originally I had a minor prolapsed disc while nursing in approximately 1983/4 in those days lifting was a constant part of the job and at the time it happened I was in placement on an acute geriatric medical ward so an awful lot of lifting. I was taken from the floor of the clean utility room where I'd been fetching something in my nursing uniform by porters on a trolley where the orthopaedic consultant was called, the bonus I guess of injury on duty. I had every test going and the consultant said my disc had prolapsed but not come out as far as some discs and he recommended flat on my back bed rest for as much of a 24 hour period as possible for three months before going through all the tests. He felt the disc may settle into place by itself. I had the physio team on site give me tens twice daily which allowed me a short time to wash or eat before the pain would be back in full force. Long story short 3 months later and the disc was still out of place and unlikely to return. I think he thought it would settle pain wise and certainly the pain lessened though since that time I've had pain on bending forward and limited mobility in my lower spine. In 2001 normal pain killers weren't enough so my then GP sent me for x-rays which showed degenerative disc disease, erosion to discs, facet joint disease and osteophytes and I was given tramadol which never removed the pain by kept the pain at bay so I could walk okay. Oh the orthopaedic consultant I saw then said all the degeneration of that spinal area was almost certainly caused by the prolapsed disc causing undue pressure there. Then over the last two years the pain has got speedily worse until mobility is really painful and I'm on strong pain meds now having coped only with tramadol up until this last couple of years. I had an MRI scan said that the pain was being caused by the area of degenerative disc disease, he said it wasn't operable nor would injections help and it was purely pain. I have "over sensitive nerves" (his words) and the pain is neuropathic and it was all about pain control and suggested that I attend the pain clinic where various things might be helpful. He was pleased that the MRI showed the crucial nerves running down through the centre of the spine were intact so my legs, bladder and bowels would be fine. Other nerves can't be seen well on MRI bur he said where the nerves were over sensitive based on my symptoms and what triggers the pain. I said I do have urinary incontinence when the pain is severe and he said the nerves involved are beside the bladder and when the nerves trigger that causes the muscle beside it to spasm, that muscle being my bladder muscle. I'm just unfortunate that some of the affected nerves are beside the bladder.

So in summary, one disc is out of place but not fully prolapsed, from what I understand had that happened more recently the disc might have been removed but then that wasn't mentioned and to be fair the pain lessened over the months following that, then in 2001 I was diagnosed with the degenerative disc disease and all that goes with that and now in the last couple of years getting increasingly worse is neuropathic pain due to over sensitive nerves. They don't show up on the scan but symptoms say they're around the DDD area and run closely with my bladder.

Sorry that's complete waffle. It will be interesting getting to the pain clinic, I may learn more about what's going on and why. My main question is if I've got these nerves being "over sensitive" a term that makes me feel it's minor and I'm being a wuss, why have they suddenly become over sensitive in the last 2 years and so severely? There must be a reason for it and no one has given me a reason.

I hate the incontinence it causes. Sometimes my pain relief means I am pain free but because I walked from A to B I am suddenly wet and need to change pads because while I didn't feel the pain of the over sensitive nerves they obviously still spark off and send signals which triggers my bladder even though I haven't felt the pain. I am getting much better at being prepared to deal with it though which is good. I just wish I knew why.