Fibromyalgia

[Meds123]

Hi all,

I’ve been taking sertraline now for at least 6 years for anxiety and depression and I’ve now been told I have fibromyalgia I was given pregablin and would like to know peoples thought about this drug.

[Cat00]

I gained a lot if weight with Pregablin, I was crazy hungry. I found its older cousin Gabapentin not as bad for weight gain, although I still gained weight with it too. Ultimately I didn't think either worked well enough to put up with the side effects, although Gabapentin did help me get through a bad period mentally so it did help a bit.

[Meds123 in reply to Cat00]

Thanks for the information about pregabalin I’ve always been cautious about taking medication.

The doctors have prescribed me Dihydrocodeine for pain as-well

This I have been taking as it helps me to relax but can’t take to often as I get migraines

I’ve never tried so much medication before like I have now so it’s a lot to take in at the moment.

Everyone I’ve spoken to about this condition have never heard of this before and nor did I

I just don’t know what to do or take for this it’s all new to me.

It feels like something has taken over my body I can’t do what I used to do anymore it’s depressing

It’s all to much in one go I’ve now been put on zero contact hours with my job as I’m not coping with the work getting tired, feels like got no strength

I find I end up in my bed most days with this fatigue is this normal or am I overthinking about the pain and tiredness

[Cat00 in reply to Meds123]

It's actually quite a common illness, the NHS reckons about 1 in 20 of the UK population has it. Be aware that pain killers are not recommended for long term conditions such as fibromyalgia . Pregablin and Gabapentin are controlled drugs that can be highly addictive, the chances are your Gp's will encourage you to come off them eventually. Having said that I did not find them addictive. I don't take anything for my fibromyalgia as nothing really works well enough to put up with downsides. I also have chronic migraines so I can only have painkillers 8 days a month too.

[Matrix in reply to Meds123]

I take Dihydrocodeine Continuous as well . It’s a miserable condition and it does not come alone ..You must try and have a life or all the pain feels worse . I’m a crafter and it helps me so much , otherwise all your life becomes nothing .I have been down that dark hole and it wasn’t fun . The pain and fatigue is normal for this condition I’m afraid . Xx

[Meds123 in reply to Matrix]

I’m going back to work Monday to keep active I can’t stand sitting at home doing nothing

[Matrix in reply to Meds123]

well if you can that’s good but pace yourself . It will help you if you can. I had to give mine up I just couldn’t cope . But once I gave up work my health became much worse and has continued to get worse . I try to get out once a week the rest is spent crafting or laying on my side with a hot water bottle on my latest pain ( Piriformis )pain in the butt . Wishing you all the best you can have a life it’s just different . 💕💕

[Meds123 in reply to Matrix]

For me it’s only 2 hours of work a day and I get help sometimes. I know I’m going to be exhausted and in pain but I just feel if I don’t do it, I’m giving up and I don’t want to give up. Plus money is something that everyone needs at the moment so if I don’t go to work I havnt got money. So I’m going to try again, I’m just lucky I got a good boss who knows how this affects me.

[Matrix in reply to Meds123]

it’s also keeping you in the world for a little longer . Don’t think of it as giving up you have a medical condition that hurts and takes every bit of energy . If you can’t work you can get benefits you know . See how you go but I can recommend a hobby although you will have no money🤣😂💕

[Meds123 in reply to Matrix]

And what hobby is that 🤣

[Matrix in reply to Meds123]

well mine is crafting and yours can be anything you fancy 🤣😂

[Meds123 in reply to Cat00]

I don’t like the thought of taking something that is made for people who haves seizures

[Cat00 in reply to Meds123]

I've been on about 15 different drugs for migraines over the years so I've been on a few anti-seizure drugs, I get migraine over 50% of the time so I'm basically willing to try anything to help migraine. I've been on a fair few drugs for fibro too but nothing works, not even morphine so I had to accept that some years ago now.

[Meds123 in reply to Cat00]

I take naratriptan for the migraines have done for years now and it helps my down fall is not taking the meds as soon as I start getting a migraine so for a few days I try to get rid with no meds I never succeed but I still try as I did like taking meds

This fibromyalgia is something else I just can’t get my head around how tired and weak my muscles have got I’ve always been someone who have kept busy on my feet and now I could be led in bed for days at a time it makes me feel sad and upset I just don’t understand it.

[Cat00 in reply to Meds123]

I cant lie in bed I'm an insomniac, can't bear being in bed for long, lying there awake, have to get up and drink some tea to help my head.Bc I only have 8 painkiller days a month I can't take my meds early or I'd run out in the first week of every month so I have to wait. Which isn't ideal. 😬

I go to the gym most days, not going makes my mental health worse so regardless of how bad I feel.

[Meds123 in reply to Cat00]

No it’s not the doctors should up your prescription so you got your meds when you need them it’s always handy to have a few for back up.

[Cat00 in reply to Meds123]

I don't run out of meds I'm only allowed 8 days of painkillers a month bc too many painkillers causes Medication Overuse Headache.

[Meds123 in reply to Cat00]

oh I see

Yes I do aswell with some medication

[Coogy52]

I was on high dose pregabalin for almost 12 months n went from a size 12 to an 18, I put 3 stone on. It also gave me a terrible memory. My GP weaned me off it and the weight soon came off. He prescribed Duloxetine n it was much better for me and no weight gain. I have been on 120mg Duloxetine a day the last 3 years. Hope this helps you.

[Alice2004]

Hi Meds123

I am on Sertraline for over 2 years for depression and anxiety an i am on Pregabalin to help me with the Fibromyalgia and is working, it easing the pain.

It may work for you as well

[Meds123 in reply to Alice2004]

Thanks for the reply,

it’s the side affects that worry’s me until I know more I’m being cautious about what I take

I don’t like taking meds probs because my anxiety plays a big role in that.

I just don’t know how or why this happened it’s tired me out immensely feels like I got no strength and the pain as-well causes me stress.

[Alice2004 in reply to Meds123]

It’s helping me with the pain so I can sleep better at night, I gained a bit of weight but I had steroids injection for my frozen shoulder I cannot say exactly which one plays in my weight gain but I feel better and I can sleep at night

[bookish]

Hi. You may want to double check your vit B12 and folate levels (not as straightforward as it sounds, but will get to that in a minute). Some indications that Sertraline takers are low in B12. ehealthme.com/ds/sertraline... This may be because the underlying B12 deficiency was not found (which it often isn't) and was causing the symptoms for which the Sertraline was prescribed, or it may be that the cause was something else and that the medication depleted B12 (as Gabapentin can with B12 and folate). The folate cycle is complicated and can be affected genetically or by SNPs as well as by lack of intake. You need that cycle to be working well to produce enough serotonin but not too much and the same with neurotransmitters like noradrenaline. MTHFR SNPs are the commonly touted possible, but also COMT and others. Low mood/fibro/pain/migraines/oestrogen issues etc etc. I found that magnesium (on skin in my case) made me feel quite a lot better, then a year or two after found that I had (theoretically) slow COMT, which is a magnesium dependent enzyme. I also found that using the right form/s (or vitamers) of B12 and folate *for me* helped considerably, as there are a few options.

First step is to get a serum test of each of B12 and folate (B9), which you may have had already so you could have a look or get a copy if you don't have them. You can do your own if that is an option £. Can be very helpful to have a general vitamin test. (Magnesium isn't commonly tested and most of us are deficient anyway so pretty safe to just try it, in small quantities and slowly - that is why I like the spray oil for the skin, then you can take it really slow). Serum B12 and folate may be low, may even be low enough for a doctor to want to treat. (If so, do not let anyone give you high dose folic acid alone (for the folate ) until you have really ruled out a concurrent B12 deficiency, as it could make things worse. The folic acid patient leaflet will tell you that.) 'Normal' as in 'in range' B12 and /or folate does not rule out a deficiency which you can have at cellular level with any blood level, low, medium or high, but generally doctors will dismiss you as not deficient unless you are below range. A private test if you have to go that route may be 'active' B12 rather than serum (which includes active and inactive) so you can't compare results. 'Active' or holotc still may be in range and not rule out a deficiency as there are so many places in the folate cycle where things may not be working properly. Anyway, you get the idea - there is no definitive test to rule out a deficiency, but there are several tests which may rule one in.

(We have a six known generation B12/folate problem, likely genetic (B12 metabolism is strongly genetic) and I have had signs of fibro since childhood, oestrogen problems esp with exogenous oestrogen, now have small fibre neuropathy diagnosis, but all could be related).

Hope that helps!

[Meds123 in reply to bookish]

Thanks for advice I did get some vitamins for the over 50s as I’m 53

Just thought I would give that ago first as I really do not like taking medication

[bookish in reply to Meds123]

No, neither do I but unfortunately if you aren't able to absorb/metabolise vit B12 it is fatal (slowly) hence 'pernicious' anaemia. Replacing essential vitamins that you would/should be able to absorb from food but cannot doesn't count as medication in my book! Taking a B vitamin containing supplement will have skewed the results of any tests that you now do, so hopefully you had some old test results. They contain far too little to be useful but enough to make blood look ok even if it isn't (I made the same mistake which is why I'm still battling to sort this out after 50+ years of symptoms and am now being tested genetically). It is likely that your supplement may also contain the wrong sorts of vitamins, as the cheap ones don't actually work for everyone. If it is cyanocobalamin for B12 and folic acid for B9 and pyridoxine for B6, then I'd give it a miss, personally, especially if it has much pyridoxine (blocks the active form and causes neuropathy). Cheers

[Meds123 in reply to bookish]

ok Thanks I will check with the doctor instead

[bookish in reply to Meds123]

Have a look at your supplement first, and if you want GP to re-test you, come off supplement for at least 2 or 3 weeks. Still not ideal. Hopefully you can ask them for copies of all your old results then you'll know what they've tried and what has been missed. Your doctor should know that Sertraline lowers B12 so should have tested. If not, show them a copy of the link I sent you.

[Meds123 in reply to bookish]

Ok thanks I will ask them about my tests that I had

[GrumpyTired]

I took pregabalin for 3-4 Yrs, just recently come of it.

It gave me a great boost during a really difficult period and helped me stay at work. It doesn't suit everyone but it can give you a lift and reduce your pain by a considerable chunk if your lucky.

It really chills you out a lot, if you have anxiety it will probaly help that a little.

I started to get a lot of headaches around 2 yrs ago and eventually my GP suggested i come off the pregablin to see if it was a side effect.

I have been considerably less foggy, less forgetful, less zombie like since stopping them, but my pain levels have increased a fair bit. I'm glad I gave them a go as they helped for a decent amount of time, but no treatment is perfect for Fibro.

[rosewine]

I have been on Pregablin for about 13 years now. It is quite a low dose as I don't tolerate many medicines. The first few weeks I felt on another planet but eventually realised that it had taken the pain down from very high to bearable most of the time.I did find d it gave me a "sweet tooth " which I didn't have before. I have had to be strict with myself but still have some treats. I actually eat much healthier now and weigh less than before taking it as it has enabled me to do more exercise.

We are all individuals so what suits one doesn't suit another. I was so desperate that I felt it was worth trying. If you decide to take it hope you have a good result.

[dparkinson]

HEY I WAS ON PREGABLIN AND SERTRALINE AND NAPROXEN FOR 2 YEARS AND THE PREGABLIN ACTUALLY HELPED WITH THE PAIN HOWEVER MY DOCTOR TOOK ME OFF THE PREGABLIN AND SERTRALINE AND REPLACED THEM WITH DOLUXETINE IN THE LAST 3 WEEKS SO I'M TRYING TO GET USED TO THE CHANGE... I FOUND THE PREGABLIN MUCH BETTER FOR THE PAIN TO BE HIONEST BUT ITS S CONTROLLED SUBSTANCE AND MUST BE USED CAREFULLY