Pain relief

[Macjayne]

Hi I'm knew to this and just recently been diagnosed doctors say there's no medication to treat fibromyalgia it's all down to life style? I have also been told I have ibs. Does anyone take prescribed pain relief?

[Macjayne]

Like what please I'm already on sertraline for depression and gapapentin for restless legs but the pain in my back and neck is awful.

[Macjayne]

I'm pleased your mood has improved it's awful feeling down. I take 300mg 3xday and sertraline at 150mg a day I'll talk to my gp thankyou

[Danniava]

Hi iv just been diagnosed 2 weeks ago but have been treating for fibromyalgia for 9 months. I fine naproxen helps alot with my back pain and amitriptyline at night for headache and sleep and also sertraline. Hope you find something that helps 🙂

[Hazel_Angelstar Administrator FMA UK Staff]

The NHS website gives you information on the different types of medication that can help fibro symptoms

nhs.uk/conditions/fibromyal...

Not everyone finds medication helps, and it can be trial and error finding what does work for you.

I'm on a combination of pregabalin & mirtazapine, with tramadol and paracetamol but took me many years until finding that combination.

Lifestyle and self management is also very important ... Pacing, exercise/activity, heat, complementary therapies, aromatherapy, muscle rubs, distraction etc are all things I use daily

[Sarahvit]

Yes there is medications out there for fibromyalgia. The most common ones are Lyrica, Cymbalta and there is another one but my brain went blank. For pain I take 2 tremadols and for really high pain days I have hydrocodone 1 a day. I only get 30 for every 3 months. Oh amitriptyline to help with both depression and pain. That wasn’t the one I was trying to think of earlier. I’m on a lot of medications for other conditions that go along with fibromyalgia and company as I call it. Gabapentin I take for neuropathy which I don’t have diabetes just some conditions like Gastroparesis which is common in diabetics but that diagnosis I got in 98 when my stomach was slow at emptying out the radioactive eggs 🥚 and orange 🍊 juice 🥤in a gastric emptying test but about 5 yrs ago in another state different doctor 👨🏽‍⚕️ordered another gastric emptying test but only used orange 🍊 juice which emptied out in under 90minutes where as the one with the eggs 🍳 2hrs later it was still in my stomach which the tech called the doctor 👩🏼‍⚕️ who said tell her she has gastroparesis and let me go. So different diagnosis comes and goes with this fibromyalgia another one is ulcerative colitis which has gone into “deep remission”.

[Macjayne in reply to Sarahvit]

Thankyou I will speak to my gp and my god your really going through it hope it eases up soon

[Sarahvit in reply to Macjayne]

You are welcome, I was diagnosed back in 94 but it started up when I was pregnant with my daughter. I thought it was high hormones that was making me sick. After I had her I felt much better but felt like something was off. Then we moved to Wyoming where the natives said it takes a year for your body to get adjusted to the high altitude and climate. So I just thought it was the adjusting to the climate that was making me sick. How long have you had the fibromyalgia? It has been rough but having friends who has it too understand what life is like with this stupid disease makes it a little easier. Also my faith in God also gives me strength. I just reread your post and saw you are new to this fibromyalgia. It effects people differently. The fibro fog has been a challenge for me. I hope yours is a milder case. Hugs 🤗💕🦋🌼🌺💜

[Broadfield]

I take Duloxetine, 20mgs twice a day. It has really helped me. You need a good understanding G.P.

[Fuchsia123 in reply to Broadfield]

I also take Duloxetine as well as Oxycodone. I have an understanding GP but a complete tw*t for a rheumatologist who thinks I’m exaggerating my pain and doesn’t seem to want to give me a diagnosis. I’m at a loss with this.

[Broadfield in reply to Fuchsia123]

My G.P. diagnosed mine, I refused a referral back to the hospital as I thought it a waste of time, they didn't diagnose it the last year when they did all the tests to rule out other causes. I am lucky in that they medically retired me early age 56 , I'm now 64. I was retired due toM.E. ( well I did collapse in a patient's home!!!!😁 ) I hope you get on well in the future 😊😊

[Hidden]

Hi Macjayne

So it’s all down to lifestyle, so what part of your lifestyle makes you manage your diagnosis of Fibro? Did he have any suggestions I think not 😡

It does infuriate me yes, gentle exercise does or can help, I do yoga specifically for Fibro, I also meditate, not for everyone but does it manage my Fibro hell no what does is the cocktail of drugs I take it enables me to manage enough that I can carry on, get your GP to refer you to a Pain Management Clinic perhaps, mine have been brilliant and can prescribe drugs for you (mine do, not sure about other PMC’s procedure).

What drugs may be ok for some may not be ok or have no effect on you. I have learnt it’s really about finding the right ones for you oh and change your GP he sounds an absolute delight!

I really hope you get some answers soon.

Panda

🐼🥰💜

[Macjayne in reply to Hidden]

Thankyou

[MaggieSylvie]

Life style? So you've caused FM yourself? So no effort is being taken by that doctor to get you some relief? Nah - that's not right.

[Hidden in reply to MaggieSylvie]

That’s exactly what I thought as well Maggie how dismissive of Macjaynes GP. That means that if we all had the perfect lifestyle we would not have Fibromyalgia 😡🤔.

[MaggieSylvie in reply to Hidden]

We are on the same page, Panda. It infuriates me when so called doctors conclude all patients are the same and they tell you to stop eating meat, fries, sweets .... How can you stop eating things you haven't eaten for years? Likewise, unless lifestyle is visible, how can someone make a comment like that?

[Hidden in reply to MaggieSylvie]

Exactly Maggie, I went gluten and dairy free also vegan for a while I consumed no sugar and I have never eaten processed foods.

I am not overweight and I do very gentle exercise both for body and mind and would say am a well balanced individual in all aspects of my life and I am now still coming out of the nastiest flare ever oh and have never really suffered enough from IBS to impact my life so can’t really comment.

So I can’t honestly see what more changes to my lifestyle will change my fibromyalgia apart from continuing my medication 🤔😞

Panda

🐼🥰💜

[MaggieSylvie in reply to Hidden]

I suspect hormones. The usual suspects.

[D_Alexandra in reply to Hidden]

This is what a lot of drs don’t understand you can be on a strict diet and do excersise but then end up in the worst flare unable to do anything for a week. I remember my rheumatologist telling me even if I have one bad sleep it can have a knock on effect for the week and that’s what happened to me this week 😣 it all makes me anxious wondering what the next week will hold. I just pray one day there’s a cure and we will all be pain free xx

[Hidden in reply to D_Alexandra]

I just can see a way out I am in a daily constant flare but have been in bed with my worst ever flare, just couldn’t move my legs, face planted the wall and where I would be able to work from home instead of going into work I couldn’t even manage that.

I sincerely hope they do find a cure but I don’t hold out too much as it’s a pharmaceutical company’s dream the amount of drugs some of us take 🤣.

But I live in hope ☺️

[Entela15 in reply to Hidden]

Hi Panda1968, how long have you been in this flare? It's a month now that I'm suffering from very painful legs and back. I can hardly walk, can't go anywhere, can't drive, I've become housebound. I don't know how long it's going to last but it seems like I'm always in a flare. There's always something hurting. I'm so fed up with it all. 😭

[Hidden in reply to Entela15]

Hi Entela

I usually operate on a daily would say 6/7 scale of pain but just muddle through, last week I noticed my change in mood it was really dramatic never experienced such a down slide like this before it went on I would say thinking back a month or so and bang next day went to get out of bed usual numb legs and arms so grab legs and attempt to stand up face planted wall and the rest is history now day seven, mood lifting. GP has put me on Duloxetine because the pain was such that family and friends wanted me to go to A&E my response is I am not ill I have Fibromyalgia it’s fine. I like you have difficulties walking and have not been outside since last Wednesday to go to work.

I really wish I had a magic wand because I would certainly wave it over your head I have so much empathy because I know what your going through but unfortunately also don’t have the answers, have checked Amazon magic wands are not due in until next week, sorry my humour is my coping mechanism.

Panda

🐼🥰💜

[Entela15 in reply to Hidden]

Looks like we're going through the same thing. I'm on so much medication that it's doing more harm than good. Duloxetine doesn't seem to help with pain and it just makes me constipated. I have to take lamotrigine because my face is very painful and medication for chronic migraine. I'm always in pain but not being able to walk is a new low. I'm on the verge of losing my job and see no choice but to apply for disability. More stress and worry. I keep thinking, I'm only 44,how am I going to get through life like this? Very scared and frustrated. I've lost everything because of this disease.

[Hidden in reply to Entela15]

Oh Entela

Please please don’t be so hard on yourself, yes I know it’s hard not to blame yourself for this blooming illness but perhaps is it worth talking to your GP or are they about as much use as a jelly in a desert 🌵.

I have a lot of face pain but I find warm compresses help I have this heat pad that you can wrap around parts of your body with temperature control.

I think having to deal with more debilitating issues as they arise is hard do you have friends to talk to or help you?

With regards to your job they can’t just get rid of you if you have been diagnosed with Fibromyalgia this is now acknowledged as a disability under the disability act, perhaps seeking some advice may help but I know you don’t have the fight in you, you need help with this.

I too am quite young 52 😉 and it’s hard to accept this life you have been dealt, can you get help by talking to someone?

Love Panda

🐼🥰💜

[Entela15 in reply to Hidden]

Hi Panda, my GP doesn't know what to do anymore. He's referred me to Walton Centre in Liverpool and also St Thomas hospital in London. I'm still waiting to hear from them. I'm not keeping my hopes up but praying they might do something to lower my pain. I am going to start the disability process hoping I get approved. But most of all I need my mobility back, not being able to walk has scared me. I have nobody here as my partner had enough of my illness and got depressed seeing me suffer. My family is abroad. I'm still hanging on and don't want to leave the country because I need financial help if I can't work. And after working here for 20 odd years I think I'm entitled to it. Life has changed so much for me. Until 2 years ago I was a very successful career woman, then I was hit by this with very severe symptoms. I took 8 months off work and now my contract has been reduced to almost nothing. I was suicidal for a long time. I tried different medications for a whole year and pain management here have given up on me. What keeps me going is my family. I've got nothing else left.

[Hidden in reply to Entela15]

Entela

I literally have no words, I have heard about the clinic in St Thomas’ but I also know it’s not a quick turnaround.

I honestly feel you need to speak to someone professionally and get the help you need because personally no one should feel the way you do.

Explain how you feel because quite honestly someone needs to listen to you, you do have something left that is you, you as a person, please find some help.

Panda 🐼🥰💜

[Entela15 in reply to Hidden]

Thanks Panda. I don't know who else can help me. I see a counselor a couple of times a month but when you're hurting, nothing he says makes a difference. I'm praying and praying to hear from these specialists. I am chasing doctors all the time and I've even had private consultations a dozen times. I've tried so hard.

[Hidden in reply to Entela15]

Well I truly hope you get the help you need Entela I really do and if you are really struggling am here for a chat 🐼🥰💜

[D_Alexandra]

Part of what the dr says I have found to be true and I’m a year in from my fibromyalgia and IBS diagnosis. If you try a gluten free diet or just manage to make 80% of your diet gluten and lactose/dairy free you will definitely see a drop in pain and less IBS flares. I was on amitryptline for a year but I’ve come off it now as I couldn’t cope with the grogginess effect from it the following day. Amitryltine works well for some people though if you take it in the evening rather than later at night. I hope you find relief soon xxx

[Micafe]

I was prescribed Lyrica for fibromyalgia. It was driving me crazy and I stopped taking it.

I don't know if it happens to everybody but some of the problems I had were: difficulty concentrating, dizziness, problems thinking clearly, low energy, dry mouth, depression. I still deal with some of them.

[Hidden in reply to Micafe]

Hi Micafe

Hope your well I take Lyrica I was on a very high dose and felt the way you describe I now only take 100mg a day and it seems to suit me much better.

Panda

🐼🥰💜

[Micafe in reply to Hidden]

Hi Panda, I don't remember what my dose was. All I know I felt much better when I stopped taking it. This is such a horrible disease.. nothing seems to work.

[Hidden in reply to Micafe]

Oh I know Micafe

I have just started taking Duloxetine and I am hoping for a small miracle but your right it’s a horrible disease let’s hope one day they find an effective way for us to be able to live and enjoy a full and active future.

Panda

🐼🥰💜🙏🏻

[gemmahughes1987]

I take oxycodone which I do not rec as I am addicted now but it did stop my pain. Just rest it will take time, and use cbd oil the vape helps and massage and chiropractor visits are good also.

[Fuchsia123]

Hi Gemma. I’m also on OxyCodone. I’m just titrating off steroids at moment. I just want the rheumatologist to believe me.