Recently diagnosed with fibromyalgia

[Bubblepoppy]

Hi all, I was recently diagnosed with fibromyalgia after numerous operations for endometriosis, they are now saying my endo has gone and I now have fibromyalgia and have prescribed me gabapentin has this worked with anyone and does anyone have any tips to help with the pain please. Xx

[Warrenrd]

Medicinal Cannabis. Its now legally prescribed for pain relief. Much better option than opioids. Imo. Hope you get some relief whatever way you go.

[Bubblepoppy in reply to Warrenrd]

Thanks for replying, did your Dr just give you it to try or do you have to ask for it I may have to mention it to him, my Dr is useless he says gabapentin is my last option which I know is bs xx

[Warrenrd in reply to Bubblepoppy]

You only need to ask your surgery for your summary of care, in electronic form, tell them you want it for yourself. As i hear some docs are funny about it still. I didnt tell mine until it was over and i was being prescribed.Once you have your summary, can take up to 30 days. Depending on surgery, mine sent next day. You then contact a company like alternaleaf.co.uk/

I recommend them. £15pm, registration that covers assessments and your repeat assessments, plus the cost of your medication. They will book you an assessment, you become a private patient will talk to a doctor, you then have access to legal, imo, better, healthier pain relief, with the added advantage of stress and anxiety relief. Its really helped me. I was taking 8 x 30/500 co-co a day, after three months being prescribed this, i am now taking 2-4 a day. And i feel better for it.

Were all different, so it may not be for everyone, but worth a try. Best of luck. ✌️

[desquinn Partner Volunteer FMAUK Trustee in reply to Warrenrd]

The cost of the medicine and the consultation tends to average out at about 180 - 250 per month per my understanding? Also drop out rates according to project 2021 are significant so possibly people are giving up after 3 months due to it not working for them or the price. I have not saw the breakdown but it is clear medicinal cannabis does not work for all.

As to better than opioids (which ones) and the gabapentinoids (as in the OPs case) there is still a lot of discussion to be had.

[Bubblepoppy in reply to desquinn]

Oh if that's the case then it's way too steep of a price for me, I have a family of 4, I will just have to see how things turn out with the gabapentin 😕

[Warrenrd in reply to desquinn]

Yes, i think that is about the average cost. I didnt know that, about significant drop outs, although not surprised, its a new industry, so like all, it has its teething problems. No its not for all, like most drugs.As for better than opioids, my opinion, better than any opiods, as they are simply not good for you, in any shape or form. Just my opinion. The question was about pain relief, i gave my opinion. I believe medical cannabis is better than opiods and i have been taking them for many years.

Have been prescribed mc for 4 months now it helps me.

Many benefits over opiod use. Imo.

Each to their own?

[desquinn Partner Volunteer FMAUK Trustee in reply to Warrenrd]

I am actually in favour of the research into this and like the positive signals that are coming from that research. However I think that the dropouts cannot be attributed to the new industry. It is more likely down to the protocol as the people behind this and its observational design are quite experienced.

I also think that opioids are not a great long term solution but there are differences between tramadol and morphine sulphate for example. But the op was not talking about opioids in this post.

Really glad that your benefiting from it and hope it continues.

[Warrenrd in reply to desquinn]

Yes, agreed, the research has been going on for many years, with some very positive results.I politely, disagree, dropouts i do feel can be attributed to this being a fairly new industry. As a result of cost, logistics, availability of stock, poor customer service, inadequate training of staff, problems with deliveries, the stigma still attached to this product. The people behind this are experienced at making money, like all pharmaceutical companies, thats why they trade.

Opiods, like i said imo bring far to many problems in comparison to cannabis based products. The question i answered was in response to a plea for pain relief suggesions and not to start a debate on the pros and cons of opiods. Thank you for your opinion and input. Have a great day.

[desquinn Partner Volunteer FMAUK Trustee in reply to Warrenrd]

Unfortunately the things you mention in relation to the industry to account for dropouts would not help with the quality of evidence collected. So even if they are down to non efficacy reasons then the study will still be assessed on that basis. Also to my knowledge Project Twenty21 are not making profit from the observational study as that would invalidate the results on the basis of conflict of interest / bias. Study design for observational trials is hard enough.

As to opioids, was just making clear to OP and others that gabapentin is not an opioid as that could be inferred. Also there are many that will find medicinal cannabis will not work for them. A good drug is always going to be the one that works for someone.

[Missus835 in reply to Warrenrd]

What type of cannabis do you take? CBD oil or gummies? Smoke? What strength. I have PMR, osteoporosis, and now fibro. Pain is excrutiating and GP will not prescribe anything but 325/30 which no longer touches the pain.

[desquinn Partner Volunteer FMAUK Trustee in reply to Missus835]

medicinal cannabis is different than the CBD oil / gummies you get over the counter. It will contain THC and require a private prescription.

[Missus835 in reply to desquinn]

Here in Nova Scotia we can get it legally at the Liquor Commission. What strain and strength are you using and is it working for your pain? I used to require a prescription, but no longer do. It was a bit of a rip off anyway as you had to order online from the company the "clinic" dealt with...then it became legal.

[Warrenrd in reply to Missus835]

It comes in all shapes and forms, with or without THC. I use the flower bud in a vape. Med-High strength THC. It works a treat. Its very much trial and error, with the many different strains, strengths, terpines, personal preferences on taste and smell, lots to consider.

I would recommend talking to a pharmacist specialised in this field, not someone on here.

I hope you get some relief. ✌️

[Missus835 in reply to Warrenrd]

Thanks for the info Warrenrd.

[Spoonielady in reply to Warrenrd]

I've been with Lyphe for two and a half years. It's really helped me loads but the price for 30gr a month is killing me at £150 per month. I'm disabled and I might have to drop out and back on opiods (shortec) that does not help nearly as much. Pharma greed hurts the most vulnerable. I am also in the NHS pain management programme still after a full year and not really helping the pain like MC. Like you said though everyone is different.

[Warrenrd in reply to Spoonielady]

Sorry to hear this. Unfortunately, the cost is a barrier to many people who would benefit from this.Hopefully this will change and more help will be available to the more vulnerable of us. I use my PIP to pay for it at the minute, i think its worth it, for me, as it helps with all my conditions and definitely makes my days and nights easier. I found i was always like a zombie taking opioids all day, stopped the pain, just about, but the side affects i found were not good for my mental health. I seem to have found a good level now, after years of Tramadol, codine, and Co-codamol, i genuinely feel much more in control and feel physically and mentally better and able to deal with the mental and physical challenges i have.

I sincerely hope things work out for you.

Seeds?😁✌️

[195fifi]

I could not take gabapentin due to side effects . I have just started NALTREXONE 4mgs daily. You can read up about it . The low dose is used a lot for fibromyglia and it seems to be helping people. I am in Ireland. I am 71 year old female. regards 195fifi

[Geeforce99 in reply to 195fifi]

hi 195fifi can I ask about your experience with side effects please 🙏

[desquinn Partner Volunteer FMAUK Trustee in reply to Geeforce99]

Side effects with LDN (Low dose naltrexone) tend to be colourful dreams (bright colour etc) and nausea that was the same level as placebo in the trial - about 3% of people IIRC.

So very well tolerated but does not work for all and can be a bit challenging to obtain e.g. private prescription.

[Geeforce99 in reply to desquinn]

Thank you for replying good info 🙏

[195fifi in reply to Geeforce99]

I had severe weight gain and fluid retention. I was also on memantine and mextrexine and put on more weight. I have a bad reaction to most drugs. It is 3 years later and I cannot lose the 35lbs that I gained. I do the fast 800 diet and do not use any sugar , salt or drink due to refractory migraines. I developed psoriasis from Aimovig (cgrp) injection for migraine.I have had no response to any of the new migraine drugs. My last hope now is VYEPTI Infusion 100mls every 3 months. .Seeing my neurologist in 2 weeks and going to ask can I go straight to 300mls, as no benefit with 100mls which he expected, but had to start with low dose for safety. The doctors have now discovered that being overweight makes migraines worse.It also does not help my knees as I have had 2 TKR. Only for my brother i do not know what I would do. He comes to all my doctors' appointments with me. It costs so much money as I have to pay my doctors and for some of the medications.I have private health insurance , but it really is only of benefit when I go into hospital. Hoping Naltrexone will help and I will respond to Vyepti for the migraines. My doctor here in Ireland has run out of options. I was 71 last week so time is not on my side. Regards 195fifi

[Geeforce99 in reply to 195fifi]

Hi 195fifi

Thank you for taking your time and effort to reply sorry to hear your experiencing this and I hope something or someone can offer you a solution to help or just ease your suffering for you. Take care 🙏

[Bubblepoppy in reply to 195fifi]

Thanks for replying 195fifi I will read up on that one also, I'm hoping the gabapentin helps so I don't have to keep trying others I tried enough with the endometriosis including multiple surgeries so I'm hoping its not the case for the fibro, glad yours is helping you xx

[Cat00]

Watch out for weight gain and Gabapentin or Pregablin. I've been on both and the weight gain for a significant problem for me.

[Bubblepoppy in reply to Cat00]

Thank you for replying. Did they help with your pain I hope I don't gain weight xx

[Cat00 in reply to Bubblepoppy]

I actually found Gabapentin worked better than Pregablin but they only really worked when I was on both of them at the same time, which they didn't let me do for long. Pregablin was worse than Gabapentin for weight gain too for me. I wouldn't go back on them now bc I couldn't cope with getting fatter again...Personally I only use exercise now, no meds for fibro but they got me through in the beginning when trying to come to terms with everything, so I think they have their uses.

[Coogy52]

I was on Gabapentin, then Pregablin for about 2 years. I put on about 2 stone in that time. I then switched to Duloxetine maximum 120g a day and it's much better for me and no weight gain. I dropped the 2 stone after stopping gabapentine n prevailing.Hope this helps you x

[Bubblepoppy in reply to Coogy52]

Thanks for replying. Did they help with your pain too xx

[Coogy52 in reply to Bubblepoppy]

Yes they did, Duloxetine is the best for me x

[Bubblepoppy in reply to Coogy52]

Oh that's great I'm so glad it's working for you xx

[veggiefan70]

I take Amitriptyline, 10mg x3 spread out over the evening, then 15mgs of cocodeine before bed. I get no weight gain and mostly have a decent nights sleep. But as others will agree, what works for one might not for others. It can take a while to find the right meds and dosage for you. Hope you have a helpful doctor.

[Bubblepoppy in reply to veggiefan70]

My doctor wasn't very helpful when I had the endometriosis so I'm expecting pretty much the same for the fibromyalgia, thanks for replying glad your getting a good sleep with the amitriptyline xx

[desquinn Partner Volunteer FMAUK Trustee in reply to Bubblepoppy]

almost better than any drug is a doctor that will work with you so if you can change the doctor and then look at meds with them.

[Whiteclouds]

hi Blueberry, you may have been told Endometriosis has gone but the truth is you can never go on hormone replacement therapy as this will reactivate your endometriosis. I had it from a very young age in the days it was unheard of for so many years that when they opened me up it was all over my bowels and base of stomach I was in dreadful pain I had all the spores on my bowels cauterized and was put on a male cancer treatment tablet zoladex it didn’t work just most of my eyelashes and eye brows and head hair had dropped out as the years went on it returned after I got married but now the doctors were more aware of it I went through the change early as the disease had damaged my womb and my left ovary had to be removed. I wasn’t given anything I’m now in my late 60 ‘s and a few years ago was told I had fibromyalgia it’s very debilitating as it differs from one to the next it can also last for many days which can cause depression as no one can give you anything for it as it is still being researched. I have a faulty heart circuit so cannot have gabapentin or pregabalin although I was given a steroid injection in my hip which helped immensely with the pain for almost a year. I hope you get some relief and pray that the research will find something that can help us sufferers soon. Take care and rest as much as you can .

[Bubblepoppy in reply to Whiteclouds]

Thanks so much for your reply, I am on HRT after having a total hysterectomy for the endometriosis they said I had to take it so it doesn't damage my bones 😕 before that I was on prostap injections, I still personally don't think it's fully gone, I got diagnosed at the beginning of the year with fibromyalgia, and the pain seems to have spread everywhere from my toes to my head it's awful I hope something happens fast with the research it does have a big impact on my life and I try not to stress too much which elevates my pain levels, try to think positively but it chips away at us doesn't it, thanks I will rest, wishing you pain free vibes take care xx

[Whiteclouds in reply to Bubblepoppy]

Hi if as you say you’ve had a hysterectomy including removal of your ovaries then it should be safe for you to take HRT providing there are no endometriosis spores remaining if you start with the familiar pains go get medical intervention asap . I wasn’t given a full hysterectomy as I was very young and although I got pregnant twice to my husband at the time I did not manage full term and lost both babies . The disease if caught quickly and early on then a woman can still manage to have children in my case no one believed I was in such pain and that is why my inside became damaged. I drink Kefir which is a fermented milk has probiotics and other good things helps with my insides for the fibromyalgia I take warm baths with Epsom salts I order huge buckets of the stuff from Amazon and regularly soak in Epsom salt baths it does help relive the pain. I make sure I eat healthy for my blood type, and drink plenty of water to keep hydrated 6 glasses a day on top of tea or Dash water which is sugar free but a nice change from still water.

[Karengregory in reply to Whiteclouds]

Hi, I have had fibromyalgia for over 40 years now, I’m 63, because it wasn’t really common then I did a lot of reading up on it and have even spoke to trainee Drs about what it is like , my Dr asked me if I would. As for medication for fibro there’s plenty out there which do help and like with many illnesses research is ongoing. I have duragesic patches, amitryptyline and oramorph which do help but I will always have 24/7 pain just some days are more manageable than others. I’ve just been reading some research into fibro and they are now finding it is progressive which I completely agree with. Fibro has many friends that come along with it too. I need to keep up to date as I do mentoring for fibro uk x

[Bubblepoppy in reply to Karengregory]

Oh that's brilliant well done you, I'm not that brave, thank you for replying thanks for the info, mines progressed although I'm sure my GP thinks it's not it's just in my head mines also 24/7 good and worse days xx

[Whiteclouds in reply to Karengregory]

Hi sadly I cannot take amytriptolene or gabapentin or oramorph because I have a faulty heart circuit and these meds can give me cardio issues so I can only take over the counter pain killers which don’t help

[Missus835]

I cannot take gabapentin or pregablin because of the depressive side effects. GP now trying Nortriptyline, which I haven't taken yet. I have great anxiety over new meds, becx of an incident many years ago. On top of PMR, Osteoporosis, and 10 compression fractures, I now have Fibro, and the GP is not working well with me as she wants to pinpoint the pain to one of the diseases, which you really cannot. Going to try cannabis gummies or up my dose of CBD oil.

[Chrisbel]

i decided to go the natural route which has worked well for me and have written about it on my page, from treatments to lifestyle to supplements, if you’re interested take a look, happy to answer any questions.

[Bubblepoppy in reply to Chrisbel]

Thanks for replying, I'll have a look xx

[Nipper11]

Hi Bubblepoppy 👋. I was on gabapentin for a few years which had many side effects and weight gain for me. Long term painkillers stop working once you been on them for a few months. In total I was taking 4 different painkillers throughout the day plus others medication and none of my painkillers worked.

🙃 I took my self off every painkillers over a period of time and started using self-help support. I research in to my diet as some foods can make you worse and linked to flare-ups.

I now use a TENS machine for pain which can be used throughout the day.

I use warm oils and rub them into my muscles.

I do chair exercises which help me keep moving and ease pain.

Research self-help in stretching exercises every few hours this help me keep my muscles relaxed. (Look on YouTube)

I requested my GP to put me forward to the pain clinic 🙃 which helps you understand living with pain. There was video workshops which support your mindset and Quality of life and other members who have fibromyalgiaor or long tern illnesses.

They also help with your attitude about your Family and friends who perhaps do not understand your everyday struggle.

You can also look in your local community for talking therapist website. you can register online and they will talk to about your concerns or other help out there to support you.

Look on amazon for Fibromyalgia vitamins which will help you.

Keep up with vitamins C levels

Eat a good diet of high protein and green veg high in vitamins.

Use magnesium supplements.

Rub magnesium spray oil into your muscles.

Take vitamin D.

Increase your water volume it helps with pain.

There's lots of information/Guidance out there to support you in understanding living with this illness.

Of course my journey of changes has not been easy and at times hard work to keep pushing forward without painkillers. There has been a few tears and setbacks in the being.

I looked at the way my health has changed.

My mind is alive , no more 🧠 fog and i can do lots of brainstorming when required.

Less sweating and more confident to be in control and listen to my body on how to use it and when to rest . I am still Learning on improvements skills of everyday tasks like housework and gardening and walking ,shopping, hanging washing out , simple tasks for some but not for me however i am moving much more and slowly doing these tasks on my own .

These are things that worked for me and because we are all different individuals you will follow your own path of achievements in a journey in understanding how to help your body live with this illness. Keep positive and take control where you can. stress is not good for Fibromyalgia therefore deep breathing will help you.

Big hugs 🫂 and keep pushing because you are worth it. God bless xx

[Bubblepoppy in reply to Nipper11]

Awe thanks so much for your lovely reply Nipper11 🥰 glad they work for you, I'm under the pain clinic at the moment they didn't really tell me much what I didn't already know but it's worth going for a bit of advice too, big hugs to you too 🫂xx