medication?: hi everyone, I am... - Fibromyalgia Acti...

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medication?

NewToFibrox profile image
23 Replies

hi everyone,

I am prescribed 1200mg Gabapentin x 4 times a day, 30mg Codeine x 3 a day and after a medication review with a GP. I stated im still in constantly agony and pain, there isn’t a day where I am not in pain. Some days more than others but on average around 7/8 pain scale with my medication. I lather myself in deep heat, Epsom salt baths, ibuprofen gels anything to help the pain.

The GP decided now is the time to wean off all my medication as “tablets don’t help with medication and only exercise will help” - is this the case or has anyone heard this before?

I can’t imagine the pain I will be in without my medication, I try and walk 5K 3 times a week when I can but obviously, that’s not always possible.

What’s everyone’s thought about this?

TIA. X

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23 Replies
NewToFibrox profile image
NewToFibrox

”tablets won’t help with pain, just exercise will” ****

NewToFibrox profile image
NewToFibrox

im happy to try anything but I’m very scared to come off things all together because I’m worried I’m just going to be left in pain and forgot about.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to NewToFibrox

The only safe way to taper the existing medication is with the guidance of your prescriber. Everyone's opinions you read on here reflect other patients' experiences and likely won't apply to you. You may be on other medications that need special consideration when pain meds are being modified. Please report any new symptom or change of existing symptoms with your doctor and clinical team. Our opinions should never substitute the advice of your medical care provider.

Ask your gp to be referred to the pain clinic. They will decide your medication and the dr must give what they prescribe

NewToFibrox profile image
NewToFibrox in reply to Iamthemedicalmystery

I’m waiting on my referral and an appointment but I’ve been waiting nearly a year x

bertie1606 profile image
bertie1606

Hi, that is an extremely high dose of gabapentin, higher than recommended. If it's not helping then I would wean slowly off the gabapentin to try something else. Try and see a different doctor if you can.Walking 5k 3 times a week is too much, 10 mins gentle exercise (walking/yoga/pilates) every day would be better. Its not surprising you are in agony walking that far in one go, you are overdoing it!

NewToFibrox profile image
NewToFibrox in reply to bertie1606

I think this is the problem, I see lots of doctors and they all tell me different then I’m still waiting for my pain clinic referral which was referred 12 months ago x

Purplelife123 profile image
Purplelife123

I’m sorry if this is a bit blunt but would it be so bad to stop the gabapentin as you say you are still in pain anyway. The dose seems extraordinary high. Another opinion is definitely needed. Try and do a little exercise everyday … as little or as much as you can manage. Try not to do too much, space it out a bit. Good luck with the gp. Would be good if you come back to tell us how it goes.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Purplelife123

You can't just stop gabapentin without careful medical supervision. It needs to be tapered slowly, and can often result in a major flare.

Purplelife123 profile image
Purplelife123

as the message said this person is doing this with the aid of a gp I just gave an opinion which is what I thought this platform was for.

Trappedmoth profile image
Trappedmoth

Fibromyalgia is a very problematical disorder. No two people (including doctors and researchers) agree about much relating to it. Most important is the fact that recent research suggests that seizure drugs like gabapentin are of little or no use in dealing with chronic pain. And opiods are dangerous, addictive and of little use in the treatment of chronic pain like that connected with fibro. In fact, it may even increase the pain rather than relieve it. For both these families of drugs, as suggested earlier, you will probably need to gradually decrease your dosage (ask your dr for advice).

I (and others here) suggest that you ask your GP to make an appointment for you with a rheumatologist or other chronic pain specialist. You may be able to get on a chronic pain treatment programme.

My only pain medications are Sativex (medical cannabis) and Low Dose Naltrexone. Both of these help my pain and other symptoms, though they don't eliminate them. However, they are both very safe and non-addictive. However they are both difficult to obtain them with NHS prescriptions. The Sativex is very expensive, but if you look around (ie Dickson's in Glasgow), you can get LDN for about £25 a month.

Other effective treatments include gentle exercise, meditation, Tai chi, yoga, pilates etc - but gently. A heating pad or ice pack can also sometimes help.

A useful video lecture: youtube.com/watch?v=A3Bj7vb...

NewToFibrox profile image
NewToFibrox in reply to Trappedmoth

someone I know gets CBD oil from lanzorote but I just can’t afford it but she relies on it for her fibromyalgia.

I’m just waiting for pain clinic referral and listening to the GP about coming off my meds but I’m scared they’ll take me off my meds and just forget about me x

Trappedmoth profile image
Trappedmoth in reply to NewToFibrox

Don't let them forget you. If you have concerns about your health, you have a right to their attention. I'm not a medical specialist, but I agree with Lisa Snow that you should query your meds. Also talk to your doctors about getting CBD or medical cannabis - if you want to try them. There will be no change unless we make ourselves visible. Be a pest, if necessary.

Avoid stress as much as possible. Sometimes it helps to just stop and breathe deeply. Meditation and Tai chi are helpful. Gentle, paced exercise too.

LisaSnow profile image
LisaSnowFMA UK Volunteer

Could you check your gabapentin bottle to verify the mg dose of the tablet you take three times a day? The highest mg made by the original manufacturer is 800mg, not 1200mg. I wonder perhaps you are taking 3 of the 400mg tabs each day, totalling to 1200mg a day?

.
NewToFibrox profile image
NewToFibrox in reply to LisaSnow

hi, I am prescribed to take 4 x 300mg three times a day. Which equals to 1200mg three times a day. I am working with my GP to slowly reduce my codeine then reduce my gabapentin. They have referred me to pain clinic however, I haven’t heard anything from them yet and I got referred 10 months ago.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to NewToFibrox

Oh wow that is indeed a really high dose. I don't know how you stay awake on such high dose! Where do you find the most pain on?

NewToFibrox profile image
NewToFibrox in reply to LisaSnow

they don’t really affect me anymore. I get most pain in my shoulders, legs, and back. X

Ohio Thia

I love Trappedmouths comment. However one cannot get medical marouana on NHS, only when one has private medical insurance. Like Trappedmouth said it only eases the pain.

I am bed bound so I can’t do exercise, I am with 3rd pain clinic. The last one only phone me after 18 months during COVID, being backwards and forwards since.

1. I am also on 300mg x 4 times per day… ( gabapentin. Suppose because I can’t do exercise. And have severe pain syndrome.

2. I do take 1 x 30mg codeine per day. ( opioid )

Then I take oramorph 2.5ml to 5 ml 2 to 3 times per day… sometimes more but I can’t put up with the puking…. So I try to take halve a teaspoon 4 to 5 times per day…, that works for me, but whenever the carers take me to A&E they always give me 10ml, I hate it. However it instantly help. But it has come to a point that I don’t want to go to A&E jut to get more Morphine and to be sent home after…

So the day or night Carer just put me in commode wheelchair and give me a hot shower, hot boiled strained tea with, fresh ginger, fresh garlic, fresh lemon with peel, fresh turmeric, manuca honey, dry bay leave and 3 cloves, ( disgusting) and aspirin. Voila and I feel better….. ( some said I should start drinking scotch , but I don’t drink …. Maybe I should try …. So oramorph just another opioid

3. I am on highest dosage Duloxatine , for pain, diabetic neuropathy & severe depression.

4. Then I take topamax or topiramate 25mg for migraine’s, if I don’t take this I can’t take the duloxetine.

5. Celebrex as anti inflammatory

6. Numerous other tablets:

Metrocloprimide for nausea.

Bendrofloramide ( water tablet )

Amlodipine for blood pressure

Gligazide diabetes

Gloucophage diabetes

Pantroprazole ulcers

Famotidine ulcers

Fexofenadine allergies

Laxido constipation

I can’t remember all but this is most.

So besides fribro, I have spinal stenosis, degenerative disc disease, left hip dysplasia, biliteral tinnitus, but having severe pain syndrome just made everything worse.

Lots of love and light to you all

in reply to

Ss I meant 1 by 30mg codeine 3 times per day … but in Europe apparently they sell codeine in 100mg tablets… so I was told by someone

Rosie49 profile image
Rosie49

Hi, I am so sorry to hear that you are going through such awful pain. I have never heard of a Doctor taking you off all your pills to exercise. I do know that some Doctors have different views on what can help. One Doctor told my son to eat lots of fruit & veg and that would solve all his problems!

I do wish you well and hope that you can get things sorted. Maybe a second opinion may help. Try and look for a Doctor in your area that specializes in Fibromyalgia. 🙂

NewToFibrox profile image
NewToFibrox in reply to Rosie49

thank you, I am waiting on a fibromyalgia clinic or pain clinic to verify what I’m suppose to do but I still don’t believe everything they say because I rely on my tablets to get me going and to sleep on a night: xxx

Luckylady1978 profile image
Luckylady1978

don’t let the docs take you off the meds completely you will be in so much pain .pregabalin good I’m on that maybe the doc could give you some Meloxicam it’s for arthritis but it helps the fibromyalgia pain in my arms

NewToFibrox profile image
NewToFibrox

I am going to speak to them in 2 weeks for another medication review. They’ve told me to wean myself of the codiene for now.. I’ve come down but I’m not coming off it, I can’t. I’m trying to it’s impossible to sleep if I don’t at least take it before bed then I get get out of bed in a morning without taking my gabapentin at 6am to get out of bed for 7:30am. I seriously don’t know what to do as some Gps just don’t believe in fibromyalgia and want me to exercise which I try my best to do anyways (walking but still exercise when my body is screaming) xx

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