Fibromyalgia Action UK

No pain management

Hi all I'm in a very vulnerable state at the minuet. And any advice would be great. I feel that when I go to my gp i am not getting the proper support that I need I just tend to just suffer and deal with my pain. So far my gp hasn't managed to provide me with any suitable pain management for my fibro. I am very down I have no energy and feel like swollowing anything just to get rid of the pain. Or getting blind drunk just to numb the pain. I don't know what to do my Dr's really don't seem bothered about giving me pain relief. What would anyone advise because I can't live like this anymore surely someone can offer me somthing to help my fibro pain. I just feel like my life isn't worth anything at the minuet. And I'm about as much use as the cardboard in the garbage bin. What medications could I ask for. And who else can I seek help from. Should I change getting my gp will that make a difference. Or should I demand to see a pain specialist? Thanks in advance.

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I totally understand, in fact I posted almost exactly the same thing this morning!

I think it's worth doing some research on what are the general medications prescribed. Pain killers like ibuprofen don't usually help.

Keep on at your doctor.

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Apparently my gp says their is little more pain meads they can offer me. Maybe that's because they only want to offer me the cheepest option. Sorry you feel this way as well.

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Ps excuse the typo mistakes.

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Are you taking anything at the moment? From the Gps point of view, they've got to be careful what they can give you in case it reacts with other meds.

It may also be that you've already tried them but they didn't work?

Have you asked them if they can prescribe you to a pain clinic?

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I have tried 3 different medications all failed to agree with me. And they gave me naproxen 3 weeks ago. They haven't worked or eased any of my joint pain. I think I should ask to be referred to a pain clinic. If they refuse that then I will look at changing my gp practice.

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I think that sounds like a good plan. Like you, there's lots I can't take. Unfortunately, it makes it harder to find things that do work.

Good luck.

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It's not easy. And I wish you well in finding something as well. Best of luck to you.

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I'm fairly new here and don't want to agrevate anyone but Fibromyalgia isn't joint pain. It is all of the muscles and soft tissues (ie. ligaments etc) in your body. If you are just having pain in your joints I don't believe it's Fibro. Maybe it's something else such as Rheumatoid Arthritis. If I were you I would seek out a Rheumatologist if the pain is in your joints.

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The one thing that gives me the most relief is soma a lot of doctors are not prescribing it anymore because the CDC in the US has decided that if you take Soma with certain other medicines it is supposed to be like taking heroin when they took my Soma from me they told me I was not on any of the drugs that cause that but my pain management doctor decided his Clinic would be completely Soma free so I went for a year without it but when I had to start seeing an oncologist because of a chronic case of Epstein-Barr he put me back on it and it has been so much better with it I don't know how much longer I'll be able to get it but it makes a world of difference in my spasms and even my pain but I also take a large quantity of Neurontin with it for all of the neuropathy I hope this helps and I'll say a prayer for you

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I also forgot to say just keep changing doctors to you find the one that works with you I had to I have a pain management doctor but then I also have my primary care in between the two we kind of work it out sometimes it takes a while to find the right crew to take care of you

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Sorry your in so much pain there is medication for pain relief if I was you I would first change my GP look up the practices around where you live and see what they offer and the reviews from the patients. You need support from your GP then go from there hope this helps

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Thank you. Yes I'm seriously considering it. I feel like a lost cause with them. But I just hope I don't get the same treatment if and when I decide to move.

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Can you try a hot bath to help, hot water bottle on the most sore places.

Also I have a electric blanket that helps xx

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Hi thanks for commenting. I do all of those quite regularly and nothing seems to help me unfortunately. My bones crack and I have even started to pull my muscles with the slightest movements. Appreciate your advice though I might have to try the hot bath later.

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Am the same, am disabled, so I can’t even have a bath , only shower, and it don’t help, what pain meds are you on if u don’t mind me asking .

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I'm sorry to learn you are disabled sweet. The last thing my Dr prescribed me was naproxen I could have cried. They do not work. I have tried duluxotine, gabapentin 1200mg and amitryptaline as well. And the usual over the counter painkillers ibroprofen, paracetamol, I did find the opioid one helped me more but they can become addictive and the Dr won't give me those. If I exercise it knocks me off my feet for a week or so. Can't win at the moment or least that's how it feels.

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Hi Hun

I think we all suffer similar fates - mainly or more likely due to lack of knowledge or understanding of the condition ... I went into hospital on an inpatient pain programme - from that I’m on Amytrypiline Mirtazapine Targinact Paracetomol Ibuprofen and I have Vit D and B... my pains are horrendous but I do get 3-4 hours fairly good levels and I sleep much better most nights anyway - I’m suffering horrendous cramps though in my legs and feet - drives me mad with the burning stinging and tingling pains ...started magnesium and tumeric supplements .... I’m considering Cannibis oil treatments if I don’t get any further when at the hospital next week x x

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Aww not good, ok I was on tramadol, 24x50mg a did ( way to much) (prescribed is 8x50mg). I went on them for gallstones, ( pain crippled me)

The longer you take them the more you take, in my experience as everyone is different huni, i got used to them quickly, if i missed a doze, I had a very sleepless night, restless legs(which bothered me more) sickness shakes, I felt like a junkie

I got my gallbladder taking out and I was still on the tablet six years later, I was in a rut, I threw my self into work, taking the 24 a day, I didn’t know what to do, I had a break down at work, the following weekend I had enough, I was up my attic, my daughter 5 years old was down stairs, I put a rope round my neck, and tried to jump, I managed to stop my self as my daughter walked up the stairs, the following day I phoned my doctor at the mental hospital, I spent the next 6 weeks there. I went from 24 a day to 1 a day,and am still on 1. A year and a half later.

If they offer you it please really think about it, if I can save a life from this horrible drug..... I feel better xx

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Aww no way. Thanks for sharing your experience. And thanks for the advice. I hope I find something soon. And I will think about my options before deciding on any of them especially if they offer me that. Sending you my love.

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Your welcome sweetie any time x

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I get tramadol 50mg caps (take 2 4xs daily) don’t take them 4 times or daily, I do take x4 wen needed but wouldn’t take daily, to be honest they don’t do much anyway, even if they did wouldn’t take any opioid every day morphine 120mg works pretty good but again for v.rare occasions plus the doc who gave me them about 4years ago has since retired and new docs unlikely to prescribe so I have about 6doses left for times of desperation, wud like to have more (you feel a wierd sense of security knowing if things are at that point you have something) diazepam can help with muscle spasms but again i’ll only take for a few days at a time. I think most pain meds’ are ok so long as people are aware of the risks and potential for addiction, however I do get how easy it can be to continue taking something that works (until it doesn’t and you can’t stop because of withdrawal) used to be an addict, so maybe that’s why I am so careful as I am well aware of th risks and how easy it can happen, still if used carefully they still have there uses....good luck getting off the last one and hope everyone of us can get someone to listen and maybe feel a bit better🤞.

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Naproxen in my mind dose nothing especially if you have been on stronger tablets x

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That's what baffled me tbh. I am at my whits end.

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Hi im new to this site but you sound like you need to talk all this out with someone you trust. If not i would go to your Dr. And as firmly and politely say you want to be refuered to pain management at your nearest hospital, tell the Dr, exactly what youve said here, about how you have no support, no plan, and cannot go on without the right medications and follow ups. At the pain clinic they will have courses on manageing your pain, and what to do when you have a flareup . Good luck sweetheart. X

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Thank you very much. Your right I don't feel like I'm been taken seriously and I need to press for further assistance. I feel like a zombie I have a very supportive partner. But I don't like to moan about me although it wouldn't be an issue I just try and deal with it best I can. Reading my replies I will seek a second opinion and demand to be referred to a pain specialist. Thanks for the reply.

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I am also new to this site but I agree with you, I think that you should demand to see a pain specialist and get the specialist help that you need to deal with your pain. I went to see a pain specialist and they were very helpful, and I am now on a 12 week pain management programme with the input of physiotherapists, psychologists and specialist pain nurses. I demanded to see a pain specialist and it’s the best decision I think I have ever made! The pain sometimes makes you feel like you aren’t worth anything and can’t stand up for yourself, but it is worth finding the strength if you can. Good luck!

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Have you seen a rheumatologist , they usually deal with fybro etc, don't give in , keep on at your Dr, have you tried Dyhydracodiene at all, I find them good, take care,. Also try some Epsom salts in that bath, great for your muscles 😃

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Hi,sorry to hear your suffering,ask for a referral if you’ve been around the houses with meds that don’t work I’m the same I have c.o.p.d and chronic pain and my gp won’t prescribe anything strong because of addiction worries says opioid use will spiral out of control,which I understand but the effect chronic pain has on you mentally wears you down ,it’s your gp.s duty of care to find a solution to your problem just be persistent and keep on at them ,don’t be fobbed off your the one suffering their job is to help you and come up with a plan,tomorrow is a new day 🙏good luck.

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You doc may be right about opioids being addictive but if you use a little sense then there shouldn’t be a problem, personally I don’t see the problem with a short term script so there’s no risk, FOR F*#KS SAKE don’t we all deserve a day or 2 off occasionally if only for r own sanity!.😡.

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Hi, your not wrong pain is sending me cuckoo crazy,but I’m an ex user so the g.p.wont help me doesn’t want to take responsibility so has referred to the pain clinic for the second time sometime in June 🤷‍♂️Last time I ended up seeing a physiotherapist who made things worse..

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Hi, I used to be an addict also but a day or so worth of pain relief and sanity can’t cause a relapse just some much needed relief, if docs keep leaving people to suffer and refusing any relief then people r just gonna resort to other ways of getting that relief and then things will be a whole lot worse... ask your doc for 2 day script of something and explain why (2 days for f*#ks sake)a small break from the everyday agony can make such a difference and help you cope a little better wen it all returns bcause of of that tiny break. If everyone had to work 52weeks a year with no time of or holiday time then everyone would burn out, that’s the whole point of a break to recharge the battery’s for the next round, suffering in constant pain is not only the same it’s mor important to get those breaks,for 1 there shorter, much more needed and obviously were already burnt out..good luck and maybe take someone to the docs with you for some backup, ideally someone your F.P. can’t or wouldn’t dare talk down to for fear of a severe tongue lashing, ideally from someone aliittle smarter than them!.😉

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I used to be on 80 mg methadone and a diazepam script now I’m left with them pregablin and sh**ty co codamol and they don’t do anything,ille wait till I see a consultant and tell them exactly how it is if I can wait till June as I’m thinking wtf I’ve got severe c.o.p.d anyway so I’m pretty much doomed

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Used to be on 80mg script as well, but finally got myself off, was quite lucky got them to give me physeptone(tabs) and a weekly pickup..dowt I’d get dat today. If your not with the clinic anymore there shouldn’t be any “don’t prescribe” warnings on your records so maybe another gp who doesn’t know you or Judge you maybe more inclined to help, I got most of my meds wen I was still with the service as I let them know I was already buying and taking what I needed regardless of their wimz, that plus a should I say heated debate! made them back off and tell my gps to prescribe, also given new key workers (2 this time) and other clinic docs to see (don’t fink that one liked me v.much) I know it’s exhausting wen you feel like s**t but sometimes you just have fight, and argue like a rabid dog to get what you want/need. Alls not perfect at my surgery, the docs who knew me have all retired or left and the new ones are starting to really irritate although this is over getting treatment for other health issues, if things don’t change I feel I may just snap, not ideal I know but usually gets thing moving..😈..👍.

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Im sorry to hear your Dr is so unhelpful. My rheumatologist recommended Butrans patches.

While I'm still achey I really notice the difference on the occasions when I forget to change the patch.

Good luck, hope you get some support x

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Oh bless you... I'd see a different dr if I were you & go in armed with a list of how you're feeling ( mentally & physically) & tell them you need something to ease this awful, whole body pain. Gabapentin helps me a bit, but I've had to take anti nausea meds with it since I started taking it (over 5 years) coz along with the pain, I felt like I had a bad hang over! All the best

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Just a quick suggestion. If you can find someone to accompany you to the GP appointment - partner, parent, friend - this is often a good way of ‘shaming’ the GP into doing more!

You could always write a letter or email to the GP outlining how you feel and saying that you need proper pain management support - including a referral to a pain management clinic. It’s amazing how quickly they act sometimes when things are in writing - not just being said in a consultation room.

Good luck xx

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Sadly I don't think the doctors know how to help Fibromyalgia suffers and try different meds in the hope your symptoms settle down. I was diagnosed in 2003 but had a runaround with different doctors and consultants to rule out nasty diseases and finally labelled me with Fibromyalgia. It was a relief just knowing a name to my condition.

Like you I have been on most meds and it is not pleasant!! Having your brain numbed but the pain still screaming - what's the point!!! My life, my family's life, work life and social life have all been affected and yes like many many Fibromyalgia sufferers - been in a pit of despair crying out "Why" "I can't face another day of exhaustion and pain". Like most Fibromyalgia sufferers I don't want to be a burdon to anyone but this condition slowly steals your confidence and shakes your world upside down! Dealing with PIP is so stressful! I applied in 2007 and was turned down! Only to be told "they" always turn people down rhe first time! Shocking to hear! I applied 7 years later and given mobility which is a geat help as I was struggling driving to work I only had 6 points on the other part of PIP I think you need 8 to receice financial help. So I have always worked and it has creased me physically, mentally and emotionally to try and keep going - bed to work and no energy for a life!!!

Emotionally it hurts more when there is lack of understanding and compassion from places where you expect they could be more supportive.

In saying all of the above I have constantly researched and found a book called "Treating and beating Fibromyalgia ans chronic Fatigue Syndrome. Dr Murphree .

A HUGE piece of a puzzle hit me with the information I read. I have often read that people with Fibro have higher amounts of "P" substance in their spinal fluid and this makes us susceptible to more pain!!!

But this books says that "Serotonin" blocks the "P" substance!! Serotonin is a chemical that helps us cope with stress along with many other functions including sending messages to your pancreas to send out insulin to get rid of sugar from your body!!! So many Fibromyalgia sufferers are extremely stressed, on burn out with Serotonin, they don't sleep because of stress and pain and spiral down because without REM sleep your body won't produce Serotonin!!! "P" substance runs havoc over producing and pain becomes unbearable!!

Dr Murphree recommends getting your sleep sorted naturally and recommends 5 HTP which is plant based helping you produce serotonin and melatonin which is a double bonus - Holland and Barret £15 or so. I have found since taking these for the last 6 months I have actually started dreaming - REM sleep hopefully where I am producing my own Serotonin. Sounds ridiculous but the first pain that stopped was in my elbow!!! Not funny when you cannot put your arm down anywhere!!

Of course it's about healthy eating too, drinking lots of water, taking supplements like magnesium, B complex, calcium. Everyone is different - it helps us when we take control for ourselves as pumping our bodies with so much medication is not always helpful. Also talking to people who understands is really important - goodness knows how many times I have cried - good way too release stress- science says sedatives in our tears!!

So my fibro friends it is not an easy road but there is hope!! I am learning to deal with stress (3 counsellors in two yrs) trying to reduce sugar - even sweetners wreck our systems, drink more water, take 5HTP half hr before bed, plus A-z vitamins/omega 3,6,9 and trying to eat more veg, fruit so I can lose weight .

The above is my plan to get my life back as no professional has a clue to help me so I am taking advice from the book Beating and Treating Fibromyalgia and CFS.

Also very impotant when filling out forms to claim PIP go to Rethink.org they explain how you are awarded points on the form - a real help "Personal Independence Payment Factsheet"

To anyone reading thisI do hope it is helpful as you will pick up and find life more bearable -you will have brighter days - and on the days that you are struggling- be kind to your self and take the time out that you need . 💕🌈

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Hi 60Chrissy. Thanks for taking the time to explain what you’ve found out. Do you think the tablets would be better than Sertraline. I’ve been weaning myself off a huge prescription and trying to adopt a self help approach through health & fitness. I’m really interested in the melatonin part. I have a Pineal gland cyst. The gland which is involved in melatonin production. How long did it take to feel any benefits from the SHTP?

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Dr Murphree has several pages of questionnaires to establish which chemicals you might be deficient in. I ticked 3/4 questions on each page where he says dont panic start with 5HTP to boost serotonin n melatonin. I did not use the dose he suggested as naturally unsure of it all. I think I started on 50 mg for a few days and I am not joking when I tell you my brain was "firing". Have you ever seen a scan of a Fibromyalgia brain. Lit up all over the place!! It was as if my brain felt like a sponge and I was coming home lunchtimes almost desperate for more of the 5HTP. So I took 50mg lunch time on two occassions.

I then increased it to 100mg half hr before bed. I can say say within a few weeks I was feeling calmer!! I was an emotional wreck, crying for no reason, felt burnt out, no energy to lift my arms or to stay awake - it felt like game over for me! I have run out and got more a week or two later - natural product so no aide effect. Specific pain in my elbow soon disappeared!! Although I have stiffness and cracking in the morning and general aches and pains I feel more in control!! I still have fatigue and random pain through my body for no reason e.g trying to type my hands burning and tingling!!! So will have to stop typing soon.

Did I mention about the blue light thats omitted from tv phones laptops - stops melatonin production so switch everything off early!!

I am several months in and perhaps 5HTP has started to help me sleep deep sleep REM where I can start to produce my well needed chemicals including Serotonin. Stress needed sorring along with healthy eating - I read about chemicals needed in brain Noraphenine which you get through earing vitamins minerals amino acids and Omega 3,,9. Serotonin you gain partly through sleep (produced in gut so if u have IBS/leaky gut need to destress - look at diet too. Then Dopermine - you can get through exercise!!

All above a challenge if a Fibromyalgia sufferer!!! But you have to start somewhere and for it was my sleep and boosting vitamins etc.

Please note I am not a doctor and the above info is my interpretation and understanding that helps me. Everyone will be different xx

Hope some of this helps you. Let me know how you get on. Take care 💕🌈

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Hi I take a selection of meds some days they help and some days i am in a lot of pain. Doctors waiting me off opioids but had a reaction to gabapentin which has put me off synthetic medication. If you want to know what I'm on just ask x

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Hard to think straight when you’re in constant pain. Most gps don’t seem to understand how Fibromyalgia completely takes over and wears us down. I found a lot of help with physio (by chance). In Scotland there is a self referral service to physio at your local hospital. The waiting list is long but once you are seen it can help with other things I had my referral to pain management done this way. My gp was not listening either. So it wasn’t up to him. Hope this helps you xx

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I know how you feel. The GP referred me to the hospital where i was prescribed pregabalin. As for pain management I was told at the first assessment to go for counselling even though I had just had one. I had another pain management assessment last December. I am going for my 3 week management programme in june. It takes time but it will come.

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Ask (insist) GP for referral to the Pain Clinic, they will understand how you feel. Best wishes.

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You describe how i have been feeling! Have you heard of low dose naltrexone (LDN)? it's something im about to try. There have been clinical trials done relating to fibromyalgia with some success. It can be prescribed as off label (originally naltrexone used to counteract opiod overdose but at doses of 50mg to 150mg) at doses of 1.5mg to 4.5mg. You are unlikely to get it from your gp but you can get a private online gp appt for £35 and rhe drug cost £20 for the month. Im just waiting for my prescriotion to arrive. Here is a link to find out more....if youre intetested of course. I wish you the best and understand your pain! ldnresearchtrust.org/LDN_Ph...

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Please let me know how the LDN works for you.

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MUST be your own best advocate!!!

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Hi Huff,

Did you have a Vit D blood test? If so, what was the result? 🤔

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Hi I have been taking gabapentin, amitriptyline, vitamin d and co-codamol, I also use ibuprofen gel on my knees back almost any part of my body that's aching badly on the day. I am sick feed up of taking so many pills everyday. I have heard and read lots on CBD oil, and I started using it today, it's suppose to be beneficial for pain, mood, memory, sleep, immune response. Let you know how it goes xx

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Look into amytriptiline, pregablin and gabapentin, all are prescribed for fibromyalgia pain.

Pain killers don’t work well on chronic pain, best keep them for flares.

I’ve been doing lots of research and these are the things that help me.

Pacing, Pilates (start with just 10 minutes of easy), sports massage, acupuncture, magnesium, CBD, compression pants when I’m on my feet, Night time spray with melatonin, lavender essential oils for sleep, rosemary, peppermint and lemon on bracelet during the day. Heated blankets help ease some pain.

Before taking anything new check it won’t mess up your medication.

Phone around looking for a GP with an interest in muscular skeletal problems or fibromyalgia specificity.

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Hi Huff35. I recently attended a NEUROPATHY seminar with a Neuropathy specialty Dr. In which he performe a blood test after taking all your pain history and if you are a candidate he will perform a procedure in which he draws blood from you, get the young cell and inject them back to you and that seems to start rejuvenating the rest of your cells all over your body and the sensory system starts working and signaling to your brain properly again. That would be the famous "Stem Cells" treatment and if you don't want them to go through the procedure of taking your blood or bone marrow, there is a Stem Cell's bank where they buy the cells, inject them to you . Its given good results. I know that becaucause my best friend's mother had the procedure done in Central America ( is cheaper down there ) and she is 78 years old living with pain almost her whole life and she said that with the first injection she experienced the pain going away immediately! I'm going for my blood test this weekend and I'll go from there. I have been like many of you suffering from lots of pain and I'm tired of it! I have done all kinds of pain "Management". When the Dr. place you on pain management is because they don't know what to do anymore and they run out meds to prescribe. People lije us tgat are in pain all the time 24 hrs a day, we have tried all the meds that the drug manufactures can create and there is no more drugs out there for us to try. I'm 58 years old, I'm old but I'm still to young to be disable cause we lose lots of sleep over these pain and that alone it takes a toll on our minds and body. By the way I'm from California, USA. Here is the info. In case you would like to find out more or make an appointment and make it a fun trip for you and family. Or maybe you would like to talk to the Dr over the phone or mabe skipe with him.

Advanced Health Solutions!

in office consultation, evaluation, and x-rays to determine if you qualify as a candidate for regenerative cell construction.

818-300-4622

Good luck! Feel better.

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