TERRIBLE FIBRO FLARE

[rosiebud]

Hi just new here, didnt know you existed. Been on Oxycontin, Oxynorm and Pethedine for a few years now. In an awful flare and nothing helping, not that they helped much anyway. Is there another drug I can take instead of Pethedine to help or should I go off the Oxycontin completely and start all over. How can I wean myself off when the pain is so bad. I didnt think it could get worse until now - its a post flu flare.

[TheAuthor]

Hi rosiebud

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of how you are struggling and suffering and I sincerely hope that you can find some resolution and relief to your pain issues. You are on some very strong and potent pain killing medication. However, they are all basically analgesic by nature. Maybe it would be beneficial to discuss with your GP or Medical Specialist about neuropathic medications? I have pasted you a link to the Arthritis Research cache on such medications below, as the same drugs are also used for Fibro:

arthritisresearchuk.org/art...

If you have already tried these medications, then I sincerely apologise. Your pain killing medications are opioid and morphine substitute based drugs, which are highly addictive. Should you desire to come off these it would be most advisable to discuss ways of doing this with your GP or Medical Specialist prior to doing so.

If you wanted stronger pain medication then it would also have the same addictive components as the drugs that you are currently taking. The only other main options would be Morphine base products themselves such as Oramorph or Morphine patches? You could ask for injections of pain killer but there is no guarantee that these would work either unfortunately. Plus there is no guarantee that your doctors would prescribe them because of what you have already been prescribed?

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[rosiebud in reply to TheAuthor]

Thanks so much for your advice Ken. I'm glad I came across this site. I've had fibro for many years along with m.e. though I still think there is little difference, since 95 in fact. I've tried all sorts and I've just become worse as the years have passed. I've been taking pethedine and oxycontin for a very long time and of course they dont work, if they ever did apart from a few good weeks when I thought I had my life back. Thanks for the advice. I am seeing my doctor next week to discuss how I come off these and what he can offer me and I will ask about neuropathic meds and let him see the link you've sent me. Thanks very much for doing that.

[TheAuthor in reply to rosiebud]

I want to gneuinely and sincerely wish you all the best of luck with your doctors appointment.

All my hopes and dreams for you

Ken

[bourne]

Flare up is the pits as I say. It sound like you r totally fed up with it . All I can do when its bad is rest and sleep and let your body do its repairs it could take time so try to be patient . Keep in touch with your gp and try not to stress about anything this is very hard one. Keep talking gental hugs angela

[Shadows-walker]

Hi can't suggest any drugs as not a medical practioner , but have you considered a pain and fatigue clinic , they would help you understand you pain , how what you do and think , affects your body , and teach you ongoing mechanism outside of the medication realm , pacing and acceptance, are vital to the control of fibro , being kind to yourself , and getting others to understand how there behaviour effects you ! would help , I know it sounds like a lot of mumbo jumbo , but if you have an open mind and get to the point nothing else helps , it can make a difference.

Be kind and gentle with yourself .

Shadow xx

Ps , I might add ,i take milkthistle to help my liver , vit d 3,200 , magnizium supplement, folic acid , dulexatine, hydrochoquinne, natural yogurt, celery ,

a laxative to draw water to the bowl , Epsom salt baths , ibuprofen gel 20%

Gabapentin, none of these meds are or were made to be pain meds , pain meds don't touch my pain ,

One is used to relax my muscles

One is a anti malaria drug

One is an epilepsy drug

The rest are vets and minerals by taking and using these meds I get relief

It has been proven that neuropathic pain does not get relief from opiated drugs

Also use steroid nasel spray to stop noes sores nasel and steroid mouth wash to stop mouth sores , also have have steroid throat spray for throat sores , eye drops , and mouth spray to keep mouth moist , drink 2 litres of water a day , have to be taught to self catharsise, also have Imodium for obvious issues when that occurs. And have med for IBS when required, there will be sun block in the summer , also regain for women , and I have venterlin . I am sure there is more but I can't remember , I am only aloud 3 caffeinated drinks in one day .

Hugs gentle ones my friend xx

[rosiebud in reply to Shadows-walker]

Thanks for the advice shadow, you've been very kind typing this all out. I should have said I've had Fibro/M.E. since 95 and gone through vitamins galore and meds galore. I am seeing my GP next week to discuss how to come off the oxycontin and pethedine as they no longer work, not that they were ever any good. I attended a pain clinic in my area 5 months ago and they gave me pregabolin to take. I went up as far as 300 mg and it didnt even touch my pain for a moment. What it did do at 150mg was improve my mood as I've found I've become very teary lately and as I've coped well for years I find this very frustrating. So I might keep taking the 150 mg for that.

[Shadows-walker in reply to rosiebud]

Good luck , I hope you get the help you need !

Gentle hugs

[TheHud]

Hubby says (he is a pain management specialist) Opiate relief rarely works for neuropathic pain. Until you feel well enough to see your doctor, you will find that simple Paracetamol when combined with codeine or other opiate pain meds works with them to produce upto a 10 fold effect on pain. See the table for the tested results. medicine.ox.ac.uk/bandolier...

Best wishes, I know everyone says go to the doc, most docs don't understand fibro pain but they are improving. Read the links that explain other meds, rest but if like me you will need to keep moving, bed is not an option and add paracetamol. You should have been on these boards a long time ago

xxx

[rosiebud in reply to TheHud]

Thanks for advice Hud. I'm glad I've found this site, never heard of it til I came across it last night on one of my wide awake episodes. In bed all day exhausted with pain and then around 11.30 pm I'm wide awake and cant sleep. All part of the fun. Not.

[Hidden]

Hi Rosiebud

I too have been down the route of strong pain killers to the extent the side effects took over my life. I am no doctor and have no medical training but have read lots from many different sources. I have also tried many alternative therapies and one I feel I should pass on for pain is magnesium, either via supplements or Epsom salts baths, body sprays etc. Or all at the same time as I take!! I say that especially now as I have gone three nights without taking my Mg supplements (stupid I know but needed to check to see if it was the Mg that was making the difference to pain levels) and now have extreme all over fibro body pain (I describe it as extreme toothache all over my body) 😰

I am just off to have an Epsom salts bath and my supplements now to try to top up my levels again. I did this once before and the same thing happened so I am sure, for me, mg supplements help pain.. Interesting video link for everyone to watch below

youtu.be/3wtUn1gWgaw(Not working as expected?)

Good luck.. Hope you get some relief soon! Jax 💕

Ps my serum Mg levels checked by GP were normal 🤔

[rosiebud in reply to Hidden]

Thanks Jax for your advice. I took magnesium along with loads of other vitamins years ago and now only take B12 liquid and D3. I will try the magnesium again and see if it makes any difference.

[Anjila]

what type of magnesium supplement do you take as there is various sorts, by the way i watched the video very interesting

[Hidden in reply to Anjila]

Magnesium Glycinate is the one most easily absorbed into our bodies I believe. A lot of us will suffer Gut Problems which prevent the absorption of many minerals and vitamins unfortunately. I have read this is the best one.

There's another interesting video from the same guy on Vit b12 deficiency... Same thing.. Gluten intolerance prevents b12 absorption from meat and how symptoms such as depression and fatigue end up being treated with ssri's cause a cycle of problems.. Problem is vitamins and minerals cannot be patented therefore Pharmaceutical companies do not make money 🤔 Doctors obviously taught pharma way and do not get much in the way of dietetics or natural remedies in training.. Shame medicine and money go together. Rant over 🤗 Jax 💕

youtu.be/p0da1xrELcA(Not working as expected?)

[Jenpadden]

Hey Rosiebud, I was just diagnosed with Fibro July 2015. My dr believes now that I've had it for at least 10 years but the worst of the pain began in June which led to diagnosis in July. The pain in my ribs was incapacitating. My dr put me on Amitriptyline. It's been wonderful for the most part. I still get pain pretty much everywhere but its pain I can handle. There's little twinges of pain in my ribs here & there & I worry about whats gonna happen but for now I'm doing much better plus I sleep so deep & insomnia was always a problem for years. Worst thing is I'm 25 lbs overweight. I hope your able to get your pain under control. Praying for you. Jennifer.

[rosiebud in reply to Jenpadden]

Thanks for advice Jen, much appreciated. I've had Fibro since 95 so been through the wars with it and tried everything I could get from my GP. Amitriptylene didnt help me, it gave me weird electrical buzzes in my head and face, stopped me in my tracks, not painful just horrid so I gave up on these. We tend to be very sensitive to meds, getting side effects that most people wouldnt get. I'm glad it works for you though and thanks again.

[Jenpadden in reply to rosiebud]

Ok rosebud I'm so sorry it didn't work for you. My dr has tried to get me to attend a pain clinic because he said even though the Amitriptyline is working for me now, chances are it won't work down the road. It terrifies me to think that there might be nothing that would help the pain. He asks me often how my pain is as I tell him I get bad jolts of pain in my legs, arms, face, jaws, etc. He wants me to increase the Amitriptyline but I told him that I'll only do that when the pain becomes unbearable again. I guess my back & ankle pain would be enough for most to increase pain Meds but I try to bare through it for now. Take care.

[HEMPFESt1974]

I have been taking Tramadol for 17 yrs. 2 50mg pils 3 times a day. I have bn in 9 auto accidents and have 2 herniated discs as well as fibromyalgia......Tmj, bursitis, and carpel tunnel.

The drugs u r on are super evil in my eyes. I have a couple friends that have died from mixing those with to much alcohol and abused them. When i started taking Tramadol I asked my doctor for a drug that was non addicting only, because I had seen other people on pills that creeped me out. Soooooo now it has become a narcotic since then. It gives me energy and helps the pain and I feel like I can actually accomplish life.

the only withdrawal I have if I do not have my medicine is restless leg syndrome at night. It is the worst feeling ever.

But with the drugs you are on....when you go off them you have to do it very professionally because you can feel more pain when having withdrawals, throw up, diarrhea, itching.

I really wish these doctors would not prescribe those strong of drugs to people with fibromyalgia untill the person tries the natural way first. Eating healthy and positive life changes is #1.

I dont mean to scare you because the people that were taking the drugs you are may have also had addictive personalities.

I have seen the change though it these peoples whole being change....they started looking all twitchy and glitchy........ not the same person. Ugh! Keep positive. Keep seeking for better and better. It is very hard with Fibromyalgia because it is like someone has a voodoo doll of you. Its very stressful. Yet we need to not be stressed because it makes it worse.

good luck!

[rosiebud in reply to HEMPFESt1974]

Thanks for answering. I've had fibro/m.e. since 1994 and tried all sorts of meds and eating etc. I know all about the dangers of oxycontin and keep well within the prescribed doses. Thing is they were great at first, got my life back for a few weeks and that was it. I'm going to see about coming off them slowly and see what other meds I can take which will work and keep on working though it looks like nothing does for long.

[TheHud in reply to HEMPFESt1974]

Hi Hempfest, you do realise that Tramadol is highly addictive and is opiate pain medication. talktofrank.com/drug/tramadol

[andi1]

hi there

How did you get prescribed pethedine and oxycontin

[bwaite]

I had a bad flare last year it lasted a month. Finally after a therapeutic message it broke

the pain cycle. I take savella

For fibro amytriptiline if I have

a flare I take Soma it's a muscle

relaxer and it helps. All other

pain killers don't work for me.

I hope this help but look into

Savella it really has cut down

The severity and how many I get.

hope this helps

[Hidden]

I have had fibro 14 years, it does come and go although the "go" is more tolerable pain than no pain! I use the services of my local hospital with Hydrotherpay, its a large hot swimming type pool but it is not a swimming club, its exercise in water stretching those tired muscles into some action, I,ve been doing this now for 7 years..Try is, ask your g.p. to refer you to physiotherapist who will access you suitable or not for this type of therapy.. I Love it...

[flossy76]

I take gabapentin it blocks the message of pain to the brain so you dont feel so much. Its fabulous for sleeping and is sometimes uaed as an anti depressant. Theres an equivalent to this amtriptyline. Some people are on either one of these. Another one is MST morphine sulphate tablet slowly released morphine or another one I use is liquid oramorph. I have only used pethadine during birth so wasnt aware you could get it perscribed but I would imagine oramorph is stronger. Whats your symptoms sounds like alot of pain..hope your flare goes away soon and this helped

[flossy76]

What is oxycontin? Not heard of this one like Ken said next option is morphine based medication x

[HB1968]

Personally I would get some diazepam to help with coming off if withdrawals are that bad. I have a fentanyl patch 50mcg every 3 days but I also use mindfulness meditation and ACT acceptance and commitment therapy as I believe Fibro needs to be treated holistically. There are days when I'm on the floor in pain when I have to have a hot bath at 2am the times when nothing takes the pain away and I cry and cry, but those times always pass.

[looneysue]

Hi

I am currently on Bupronorphene patches which release a certain amount of morphine over a period of 7 days. This helps me. I am also on pregablin and propranolol.

Good luck.