I was diagnosed with Fibromyalgia in my early 30's. I had been on Amitriptyline since then. I was diagnosed with Sciatica after suffering with it through covid for two years not sure what it was during that time. I was put on Pregabalin which helped with the pain but my sleep is disrupted , I was only get a few hours of sleep and waking up all evening. Doctor changed me over to Gabapentin. Sciatica has returned and sleep is still affected. I exercise and see a chiropractor . I am on metformin for borderline diabetics (started 2023) and now Celiac (December 2023) . Doctor advised me that he gives Gabapentin to patients to help sleep , It seems to have the reverse effect on me. Anyone having similar issues with these nerve block drugs.?
Not sleeping : I was diagnosed with... - Fibromyalgia Acti...
Not sleeping
Hi
I am on Gabapentin for fibromyalgia and other ailments that create pain. Tried Amitriptyline for six days it wasn’t for me landed up getting urine retention.
I took advice from someone’s post about sleep problems and medication. They suggested trying the medication at various times of night before going to bed. It took a while to work out what was best, I have to take it at least two hours before bed and not with other meds as some meds interacted with each other. But once I feel drowsy I have to go to bed. If I don’t I am awake for hours.
I found the routine works for a while and then I have to alter the times. But at least I can get 4-5 hours, which is an improvement.
Your pharmacist can help or ask your GP for a medication review. I had mine with a nurse and pharmacist and discussed the above they were helpful .
Good luck
I tried pregabalin and put a lot of weight on and couldn't sleep. Swapped to Gabapentin and lost the gained weight but still can't sleep. I have tried Amitriptyline which really helped with sleep but had a heart attack and the Cardiologist stopped them. I was truly gutted
thanks sorry you also suffered with sleeping issues on these meds, but now I feel better knowing not crazy as pharmacist never heard of issues sleeping with Gabapentin. I’ll suffer with sciatica pain rather than insomnia. Wish you well
I was on gabapentin for a while and I went to a very dark place struggled to function. I stopped taking it when I had a stomach bug for 3 days and the darkness lifted. Dr put me on pregablin and it was much better for me. I take it with amytriptylene and citralopram, paracetamol, and lidocaine patches. Amytriptylene helps with sleep but I don’t stay sleeping, my body says no and my bladder must need emptying at least twice a night!
It’s trial and error, I’ve had a lot of changes over the years but this combination seems to be the right one for me, and we are all different and our bodies react differently.
Speak to your GP and explain. That would be my advice
Regards
Braveheart
Hello Sha, it seems Canada is using the same three drugs for fibromyalgia as in UK.
I cannot take amitriptyline and don’t want to try the others as side effects seem as bad as the illness. Everyone is affected differently by medication generally and hopefully one day we will have truly personalised medicine.
Celiac disease and diabetes could I think benefit from dietary changes, so if your doctor could refer you to a dietician to develop a diet plan, you may find you can reverse the diabetes and maybe reduce the celiac symptoms.
Strengthening muscle groups can go a long way to supporting joints.
Even though it’s taken a long time to realise that pacing any activity allows you to do more than overdoing it on a ‘good’ day and spending the next week unable to do anything, it can avoid this boom and bust cycle.
Underestimated is the mental toll chronic illness can have, I don’t know what services you have in Canada but pain clinics can be useful and psychological therapies that address chronic pain.
There is as yet no one treatment for fibromyalgia, but by dealing with specific ailments you may reduce the overall impact.
As always this community is there for support and I hope you get respite soon.
Thanks Rusty. You are correct in your thoughts about my ongoing medical issues. My diabetes is pretty good with my A1c coming in at 6. I am working to get it down to 5.8 which takes me off the pre-diabetic screening here in Canada. Celiac pretty new but have taken all the wheat products out of my house. Symptoms from that are miner until a scope is done to see if any damage was done to the lower intestine due to fact no idea as to when Celiac started. The fibromyalgia I have learnt will not leave but the pain caused by fibromyalgia is not the same as the pain from the Sciatica. I had Fibromyalgia under control , sciatica on and off. I have decided to go back on the amitriptyline, and desl with the sciatica without drugs. Non Sleep is far more debilitating than any pain caused by sciatica. Again thanks
hi sha, I too was in my 30’s when I was diagnosed with fibromyalgia and have been on amitriptyline pretty much since then to. I am on gabapentin I had a doctor who said to take melatonin around 7-7:30pm to help make me sleepy around 10-11pm. It worked. Now my circadian rhythm has reset itself and I haven’t needed to take the melatonin for the last year or so.
Thanks for the information.
they do help me sleep, especially amitrptilene. However when I sleep in any other bed I’m usually in pain during the night Go back and try another mix. The doc will do a trial and error until one mix do the job
Hi Ellen, you just reminded me to take my Amitriptyline and other night meds. Since resetting my circadian rhythm with the melatonin I was able to sleep when I flew down to see my family in Florida and slept pretty good in my grandson’s bed. Oh I just remembered something! NAD I forgot what it stands for but reading about it while I was at my daughters over Christmas on Amazon (I had an Amazon gift card so was looking for a heating pad for my shoulders and neck) it had in my history items I had previously looked at but the NAD works on the cellular level in repairing damaged cells. It coincides with what I experienced when I was on oxygen at night for 5yrs which helped with the fibromyalgia pain. Then I had another sleep study that qualified me for a CPAP but it didn’t work as well as the oxygen did. So I ordered the NAD a month supply to see if it helps. I just wanted to pass this information along to others incase it may help someone. Fibromyalgia our bodies are not able to repair itself from the daily wear and tear of life on the cellular levels because of the alpha waves interfering our deeper sleep of theta and delta waves which brings restorative sleep. This I learned back in the 90’s. So when I was on the oxygen for low oxygen levels when I was in REM sleep it made the pain sleep in up to 6hrs after I woke up in the morning I was on to something that I felt would help others with fibromyalgia. Now I read about the NAD which was recommended on another support chat for memory but reading about it helping with cellular recovery I thought I would give it a try.
I hope you find it works well for you. Here’s hoping for a healthier 2024 xx
Thank you Ellen, it just came earlier this evening so I haven’t taken any yet. Probably will take one tonight.
Hi, as we all know different combination of drugs works differently for everyone- I didn't get on with gabapentine but amytryptilin and pregabalin work for me. I can get a decent sleep if I take them about 3 hours before I want to sleep 😴. Definitely ask your gp to refer you to a pain clinic, they have a far greater understanding of how the drugs can be tailored for the individual needs of patients.
Hi, I am coeliac and have fibromyalgia. Currently I take pregabalin 3 times a day and then take a low dose of amitriptyline at night. I still have some bad nights but it is better.
I have a trapped nerve and have had my Amitrptylene upped plus split into twice a day instead of just night time and find it helps along with Pregablin being doubled.
I find im waking early hrs say 5 am in bad foot pain so i take some morning meds and back to bed and find i get up feeling ok. Some days ill feel more tired than others but ill take that over the agony from a trapped nerver.
GL and hope the Dr can get a balance of meds that help
hi Sha1091,
I have fibromyalgia and take Gabapentin for nerve problems, i don’t think it helps with sleep either, but everyone reacts differently to medications. I saw a UCLA neurologist and she told me it helps with nerve and migraine problems, I can’t recall being told it helps with sleep. Have you tried melatonin? (Taking it earlier 9 pr 10 pm?) I hope you find something that works for you.
I didn't know it helped with migraines. Will look into it for someone I know who gets horrible migraines. Many thanks.
Thanks Jenna
HI... it might be worth you trying to increase magnesium. Have read there might be some correlation between the two. I was waking every couple of hours and have started taking magnesium l- Threonate (4) they do say space them out, but I take 1 earlier in the day then 3 in the evening. Magnesium can help relax muscles etc. So check your diet as well. even just a banana before bed can help. I tend to keep off of quick fix meds... as they can be addictive.
The strongest I'll take is imipramine... taken before bed makes you sleepy. You don't want to take it during the day.... xx
I don't find that amitriptyline helps with my sleep at all. have you tried a sleep patch?
Hi sha1091, I am on amitriptyline, meloxicam and co codamol for pain. I had sciatica too and the only things that helped were exercises and massage by a sports therapist. It kills the first few times but helped a lot. I would definitely recommend the massage. It worked for my son’s sciatica too. Hope this helps.
Hi sha, I'm replying because I had a prompt in my HO email because amitriptyline is on my introduction details but I would think you know much more about Amitriptyline than me as I stayed on it less than six months after my diagnosis in 2012. I felt like a zombie so didn't want to try anymore pharmas, and instead, traditionally trained acupuncturists have kept me going ever since plus chiropractic which I had also first started using when I lived in Canada for five years.
I mostly use and explore herbs and vits now and being over sixty when first diagnosed did not have the extra stress of working. - I'm not coeliac although the test done years ago was only negative perhaps because I was not told I should eat gluten and I had already given it up for a while. - My now daughter in law ( who gives me great advice) is Coeliac and she has had the chance of seeing a wonderful older and experienced woman dietician who put her on Daosin which can be found on the web. (This lady is overloaded by clients so there must be something in what she suggests.) Anyway, I am trying the tablet every now and then which I get from Amazon. Moderately expensive but worth a trial. I often lose the little white plastic dispenser so don't take them with great frequency but they do help when I do and evidently still help quite a bit even if you take them a while after the suggested time. - As you exercise and are seeing a chiropractor you will look back in time eventually and know that also made a real difference.
Besides back pain, sleep is the real bugbear with fibro for many of us as you suggest. I use a fitbit watch and get readouts on different types of sleep on my ipad. It has helped convince me that on average I get enough to function reasonably to cope with the necessities. I've also learned some positive info about the effects of cortisol in my system from lack of sleep from posts and replies a while ago here and what also seemed to give me back half my life was starting taking D-Ribose for releasing energy. I think it can be appropriate for diabetics so you could ask your Doc. It's a resource that gets me through the day sometimes though I take breaks from it and never take it after about 4pm.
Meanwhile, I hope you had a reasonable time during all that is involved in Christmas. I am planning how I am going to recover from crawling my way through ours and the simultaneous upheaval of repairs to the roof and re-plastering going on in our house. Sometime it all gets a bit much, so I hope the return of the light to the Northern Hemisphere gives you and all of us reluctant warriors a necessary extra boost and you have found some useful suggestions in the replies here. Happy New Year.
Thanks everyone for your input on my issues with nerve blocks and lack of sleep. I went to doctor today and I am weening myself off of the gabapantin over the next week. Going back on Amitriptyline tonight and I will continue with chiropractor and tens machine that I purchased. Exercise , tens, and chiro will be what I will continue with until I get my assesment from the clinic for a Cortisone shot for the Sciatica. Doctor agreed that I seemed to have a negative reaction to the nerve block meds that was causing my sleepless nights!
I have had two heart attacks in 2012. Pain Management Clinic just put me on nortriptyline for chronic sleep problems - is this a safe drug as I am on mountains of heart medication? Thanks
Hi there.
I have Severe Spinal Stenosis (with Heart Failure after a Triple Bypass & Mitral Valve Repair).
I can’t take general pain relief medication. I was put on Tramadol, Pregabalin and Buprenorphine Patches.
None of these worked. I had side effects from Pregabalin.
I have however found that Duloxetine has been helpful for sleeping.
My Pain Management Consultant has finally had to resort to prescribing Oramorph (liquid morphine) to relieve the pain.
Hope you find something to help you. Best wishes for 2024.
Kind regards
David
Hello Hidden. I so understand your frustrations about sleeping this is something which has trouble me the last couple of years.
I took my self off Gabapentin as they stop working on my pain levels and affected my sleep and increased my weight. I took Amitriptyline to help me sleep for a few years. However, they have stopped working too
I have researched in all sorts of things and still have trouble staying asleep 😴 and therefore, I can accept it part of my illness.
Nowadays, I listen to a story or music to help me fall off to sleep again.. Sometimes, it works, and sometimes it doesn't.
My advise would be keep trying different options to support you and read up on any links to sleep and fibromyalgia as things are forever changing. Good luck and take care . Happy New year 2024
I've been taking Trazodone for almost 20 years. During that time I had PMR and now Fibro. It helps me sleep consistently with no side affects. I would ask your Dr. about it.
Sorry for not replying.
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