I’ve reduced my dose of Duloxetine from 30mg to 20mg once a day, as I’ve never been sure whether it’s helping. (I was previously on 60mg.) I intend to slowly come off it completely, with my GP’s approval.
I also take Gabapentin and low dose Cocodamol which together have a much clearer benefit in my case.
However I’m feeling horribly achy and sore in my knees and hips particularly and I’m wondering if it’s:
a) the 10mg reduction (suggesting it was having some effect at 30mg after all)
b) a withdrawal effect
c) a coincidence
I appreciate nobody can really answer the above however my question to you guys is… has anyone experienced a pain spike whilst tapering down just 10mg? I think I will persevere another week but I’m a bit addled with whether I’ve done the right thing or not 😫
Grateful to hear your experiences….
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Winter_night
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Heya, coming off Duloxetine is horrific! I had horrendous side effects however, I found a natural serotonin supplement to replace it and all the side effects disappeared! I hadn't realised how bad the side effects were until I completely stopped taking that medication!
I'm sorry, I really don't know. I only found it as I needed something to replace the serotonin to deal with the withdrawal from Duloxetine. My body hates all the SNRI drugs so I cannot take any of them 😞
Hi i take Amitriptyline and I looked into it as I wanted to take htp but it can interact with many medications and substance mostly these interactions lead to a higher chance of side effects, Amitriptyline reacts with so many different medicines, I take opioids and they aren't meant to be taken together but I cant sleep or rest without the amitriptyline, hope this answers your question x
Hi thanks for sharing the above . I hadn't heard of this. I have also removed all medication. Any idea if this is also useful for the winter blues I dread the clocks moving back as it seems to increase the pain levels.
Hi Silverstorm - I used to take 5HTP for well-being before I got sick. I used to suffer with anxiety. Now I’m on Gabapentin I find my serotonin level is better although if I ever come off it I’ll be switching back to a natural source for sure as I think I’m naturally deficient. I wonder if it’s a common factor for us all? Although my fibro in caused by Ehlers Danlos syndrome, I believe I’m naturally low in those brain hormones and always have been. Thanks for your reply btw 🙏🏻
I have just come off duloxetine , from 90mg to 60 to 30 then off them completely, it’s been a really difficult journey , I’ve had physical & mental withdrawals & symptoms, I’m now at about 3 months Duluxotine free & definitely feel so much better now, I didn’t get along with the medication at all & am so glad I came off it , it’s hard for a while but stick with it , I had electric zaps & it really messed with me mentally ,it also messed with my vision, my head now feels much clearer , good luck with your journey , it’s worth it x
This is really good to hear. I was on 60mg per day (30mg AM and 30mg PM). I reduced to 30mg AM without telling the GP because they weren't doing much for my pain and I figured a lot of the side effects were making me feel worse. The GP and Pain Clinic were happy to keep increasing the dose, but not to investigate the cause of the pain. I've finally convinced the GP to change to an anti depressant and have just swapped from 30mg duloxetine to 30mg serialise, a direct swap without weaning off, only done it in the last 3 days, so fingers crossed. I am prepared for some horrible body changes, but along with holistic self help, acupuncture, reiki and breathwork, I really hope I can make a difference xx
Be gentle with yourself Alsithee4 , I’m finding I’m really tired too and sleeping loads so if you can factor in more rest than usual that might be helpful. Good luck and do check back in to let us know how you’re doing.
Thanks for your supportive reply Chelleok , and well done on persevering through it! I feel a lot more prepared now and on today (day 12 I think?) the pain is starting to lessen. I’ve just slept 8.5 hours without waking also - I’d forgotten what normal sleep was like!
Hi Winter-night, I have much sympathy for you as I followed the same path as you.
Each time I took a step down I had a spike of pain which ebbed away over the month. If I had an important event to attend such as a family wedding I would stay at the current level for two months until I’d been to the event then take the step down and go through the recovery period.
Once I got to 20mg I went to see my GP about the drop to zero. He told me not to do it as it would bring on a great degree of depression. This he feared might lead to suicide.
I have always been very determined and to me that was a red rag to a bull. I will beat this kind of attitude. Boy it was hard going, I sat for hours contemplating death and looking at ropes I’d attached to the rafters in the garage. I had some left over morphine from the time I used to take that and I took a large dose in a trial run to see what it would feel like without killing me. Well the morphine made me VERY itchy and I scratched at my self all night.
My wife did not understand why I was so grumpy, depressed and volatile and I had to do it on my own and it took around 6 weeks to come out of it. A full on drug addict Cold Turkey, I shivered for six weeks.
Get support around you, tell your nearest and dearest what you are about to do and get them to understand your situation. Go see your GP and tell them too, they need to keep an eye on you, to check in with you regularly and perhaps prescribe you something to help you through it.
I can only describe what I went through, I am not qualified, get help.
This is great advice Onceabiker , thank you 🙏🏻 I’m sorry you went through such a traumatic time on the back of something that was supposed to help. I think GP’s should be giving us leaflets with this medication, for when we start and when we taper down… the info in the box is in no way enough! Glad to hear you came through it successfully though. I had a chat with my husband yesterday and he was surprisingly proactive and suggested we block out a few weeks initially so I can just be left alone to rest and not socialise etc. It helped me warning in advance I think. I recall when there was a shortage of Duloxetine a while back and I had just 48 hours without any (cold turkey), I had a terrible recurring nightmare between sleep and waking state that people were trying to hurt me. I think I’ve been iffy about it deep down since!
Hiya, I agree with comments above, coming off duloxetine is another level of hell, but I got through it and I'm relieved not to be taking them anymore. You can't help but think what are in these bloody things 😬! I'm currently weaning off nortriptyline, round and round we go! Best of luck. Hugs x
awww thanks Winter_night 😊. I'm 2 weeks in now with the weaning. The headache is the worse bit now. I've had nausea too but that's tolerable now. I'm nearly there now I think. Coming off nortriptyline is a walk in the park compared to coming off Duloxetine. I lost weeks of my life coming off that. That was pure evil. I'm glad your hubby is super supportive (mine is too - he has the patience of a saint lol) and I think your blocking out time from 'life' until the madness passes is a great idea. It really is a merry go round - this made me chuckle as it's so true! Keep going, we are stronger than we know x
Mum and I were both on it and both had a terrible time coming off it. One doctor told mum to take her 60mg one day and none the next. This was in Covid and they opened up seeing people and I went to see her a few days in. Mum has been through so much trauma but she was mad coming off it. I got the doc to sort out how I came off it, 10mg at a time and I suffered terribly too. Coming off it. My body and mental health was terrible so it is probably very likely that. Just keep an eye on it. It also took me months afterwards coming off it to feel better. I realise now it did not suit me at all as I was getting lots of side effects and only 5hrs sleep a week because of it so obviously it really didn’t suit me anyway so hopefully you shouldn’t be so bad recovering coming off it.
Well done for noticing it wasn’t helping you and good luck
I understand how you feel Winter_night. I am on 60mg of Duloxetine and want to come off due to weight gain and I it doesn’t really work for my pain and I don’t want to go up any higher as I have put 1.5 stone on since starting it. But my god how hard is it, awful side effects. I struggle with terrible anxiety and I feel like my heart is in my throat. This is not something that is not normal for me. I have only managed to get down to 52.5mg so far any further and I feel awful. So a very slow taper is on the cards for me. sending gentle hugs 💜💜
Hi nellie_deany , I tried to reply to you last night whilst very tired and kept posting my response in the wrong place so gave up 😅 I’m feeling better after an epic 8.5 hour sleep. I’d forgotten what unbroken sleep was like before Duloxetine! You’ve done really well to take that first step just take your time. I have gained weight too, quite a bit, but was blaming it on Gabapentin and beta blockers. Maybe it is the duloxetine causing that too, time will tell! Take care of yourself and let us know how you’re getting on x
I am finally off Duloxetine, it was horrendous, like others have said the withdrawal was nasty.I am now back with symptoms like yourself but I never want to suffer the symptoms I got while taking them.
I take Amitriptyline at night which helps me sleep and Co - codamol when my pain is really bad. I do gentle exercise and go on walks when I can.
I hope you can continue weaning yourself off Duloxetine and find alternatives.
Hi, did you wean off duloxetine? Only this week have I switched from 30mg duloxetine to 30mg sertraline. Duloxetine wasn't helping much with the pain and GP suggested this change. How long did you suffer with withdrawal symptoms?
No at the time I went to collect my prescription I was told they could not get Duloxetine, told to contact my surgery, the duty GP told me that I could go cold turkey as I was on a low dose of 30mg. It was horrendous, so much so I phoned the doctors, who then told me I should never been told to go cold turkey and there was no shortage. Did me another prescription which I managed to get. Started taking them again, but within 2 days I felt so ill, I stopped. Took me at least 8 wks to start feeling slightly normal and the symptoms became bearable. My GP has now increased my Amitriptyline which really helps and I take co-codamol when the pain is really bad.
Hi canon2 , I actually switched from amitriptyline to duloxetine and regretted ever coming off it tbh. I believe it’s a good drug for pain and the wooziness is less dangerous then the duloxetine mental effects! Cocodamol is a Life saver for me too, it gets a bad rep but it works!! I may increase my gabapentin once more as not on a very high dose and when that loses effect I may switch back to amitriptyline. My GP thinks I will need to switch periodically over the long term and I’m ok with that now I think. No more duloxetine though, ever! Thanks again your replies x
oh my goodness I am dreading coming off Duloxetine after hearing these stories and
I’m on 120mg a day. The only thing I hate is the severe headaches daily and the fatigue I’m wondering if this medication is giving me the headaches even though I do take other medication for the headaches?
It does help with the body pain and Anxiety
Doesn’t take the pain away completely but does help. I’m thinking of seeing a recommended Rheumatologist.
Hi Fern27, I am in same boat as yourself currently taking 120mg duloxetine. I too think they are starting to help a little with pain though I am on prednisolone for PMR just now so that’s masking it a bit. Reading these posts are giving me concerns too - I was on oxycodone for a long while and the side effects of coming off that were awful.
I have recently started taking LDN to see if this will help as would like to come off duloxetine as have gained weight also- it’s a never ending struggle with this horrible illness 😢
I really feel for you Molliesmamma . It’s very different for everyone but I found after 4 years or so of trialling different things that gabapentin and amitriptyline work best for me (not together but one or other). I have a close friend who’s had multiple cancer ops and swears by pregablin however having tried them all too. It’s highly individual but I think this forum is a great place to check in with when you have a hunch or an instinct. Good luck with it, let us know how you’re faring.
Hi Fern27 , if it gives you hope.. I’m on day 12 now of reduced dose and the pain is still there but has lessened. My mood is ok and I am sleeping better - just did 8.5 hrs without waking! This forum is amazing, I’d be lost without it. Keep us posted on how you’re doing 🙏🏻
Hi there . Well done to dropping your pain killers . After many years on four lots of pain killers . my Conditions was getting worse until I decided to research all side effects of my drugs and my symptoms. I was so surprised that some were linked to my quality of life and mobility. I decided to stop taking my painkillers over a period of time and now free from taking them . My health has improved and my 🧠 brain is now alive.
I had to look for self help to mange my pain levels which are bad . I have osteoarthritis in both knees and fibromyalgia and other conditions to work through. I started to use a tens machine and rubbing my muscles in warm oils and using magnesium spray. Changed my diet and research food which could make my illness worse. Made lifestyle changes and Started chair exercises to keep my muscles moving and Stretching exercises which support pain. Reviewing my vitamins intake to support fibromyalgia has made me feel better. You can buy vitamins for fibromyalgia from amazon. I wore shoes to support my back muscles and legs. I currently walk with sticks and feel supported. Since stopping this medication I have lost 3 stone in weight and my overall health feels better.
Of course I not always able to control the pain flare-ups and now changed my mindset to listen to the messages from my body and rest when needed.
Looked at the way I do things. There are hot sweats when the pain is full on and dropping into cold sweats. I now rest and let my body get a balance before I push my illness to it Limits. I was not aware I was always pushing myself to hard and my body was screaming.
I research pain and asked my GP to put me forward to the pain management courses which were so very helpful to me. My journey has not been a easy one but I will not go back on to pain killers again because of the effects it has on my body.
I hope your journey is successful in cutting back on pain killers.
they do not work for long term illnesses. Talk to talking therapist on line you can pop yourself forward in your local community. These teams help you plus there advice is key.
Hi Nipper11, I have fibromyalgia too. So, thank you for your information about the vitamins on Amazon for fibromyalgia. That's another hellish illness isn't it? I am encouraged to hear that you felt better after taking the vitamins.Can I ask you how long it took before you felt a diffence? So happy you are experiencing some improvement. I'm cheering you on 😊
Hi Elaine great to hear from you . It took about 5 weeks before i felt any changes in my energy levels plus i have also started taking Black seed oil tablets from amazon and felt more changes in my flexibility . I had been dealing with pressure points laying down in bed 🛌. they have now stop no more pain in my hips or arms. Plus my skin and hair look better. My overall health I feel Is stronger and so fair my flare-ups have been under control. I done a lot of research in self-help food /diet which affects fibromyalgia and I am 100%sure that has also helped me. However we are all different individuals but worth having a go. Take care Elaine big hugs . 🫂 xx
Well done Nipper11. You deserve every bit of improvement you've made to your health 👏I've started looking at my diet too. Medics can't help us much and we have to dig deep and help ourselves and one another. It's not easy but what else can we do? 🤷
I've taken years to get to this place where I have to do whatever it takes to support my health. I'm very grateful for the information you shared.
Your welcome my lovely. I am the same as you it's taken me years to understand me and these illnesses. The more I research the more I understand my mistakes. I won't make anymore because I am getting too old for that to happen. Keep in touch and let me know how you get on as it would be so good to hear things have Improved for you honey. Take care xx 😘
Oh, I definitely will keep in touch. One thing I realised is that I have to heal my gut. So I have changed the things I eat and I'm trying to tweak my diet.You are an inspiration to me Nipper11. I've sent for the 5 THP and I'm glad you told me how long it took for you to feel better. That way I won't be disappointed when I'm not better in a couple of weeks ☺️
I'm in a bad flare atm. After 3 weeks I've managed to get up, washed and dressed. I'm taking things slowly so I don't end up like this again. I believe we can recover to the point that we will be living our best lives 🤗 xx
Very true. Little steps will give your body time to heal at its own pace. I use to push and push no more. I listen more to the signals my muscles and body are telling me . I much more happier because it use to stress me out. If my pain is very painful . I now take a natural medication called rescue you can pop some drop in your tea or any drink and it keeps you feeling relaxed without being drugs. Amazon sell the products. There self help on sleeping better and taking away anxiety 🙃. It should help your muscles to relax. Just some suggestions. Don't forget you are going through horrible flare-ups so it might take your body longer to feel the benefits of the vitamins. Hang on in there my lovely your doing so well . Be positive I know your get there honey. Take care and speak soon xxx
Aww, bless you Nipper11. Thank you for your kind words and support. I think it's this flare that's been like a wake up call. I've never been this bad.I'm getting pressure from various people to go out. I was always pushing and crashing and people pleasing. But no more. I'm learning to listen to my body too 😊
Thank you for your tip re rescue drops. I also think I may have sleep apnea and need to get it checked out. I don't like trying to get an appointment at the surgery because it's so hard to get one. But it's worth persevering to improve my sleep, which we need for healing.
Hello my lovely 😍, hope your feeling better today. The weather doesn't help any of us eight now. I been listening to music and trying to do my chair exercises which if you could see me you would smile and perhaps laugh 😃 because I look so funny at times . Music helps my mindset to keep at it. Funny thing is I sing everyday now. Be good to yourself Elaine and rest up when needed you need to get yourself out of this flare-up and put Your first for a change . Keep in touch brave lady . Xx God bless my friend x
Aww, thank you for your kindness Nipper11 ☺️ yes, the weather is difficult for us, any change in temperature is not good for us. Well done you for doing your chair exercises 👏 I love that you sing while you are doing it. I often sing when I'm going upstairs funnily enough. I promise you I wouldn't laugh at you, I'm proud of you!
The 5HTP capsules arrive today. I've also ordered some biotin and some Vitamin C. A strange thing happened today. I have been establishing some basic routines, so going to bed and getting up at the same time and having meals at the same time. I have lunch at 12pm.
My husband had gone out with his brother and I was waiting for him to come back and to make me some lunch. It got to 2pm and no husband. I decided to get something myself as I suddenly felt so bad.
I was shaking and I felt the blood draining from my face. Worst thing was I felt so weak I could barely walk. I grabbed a couple of nectarines, some crackers and spread cheese and some ginger biscuits. I ate them all, which was disappointing as I've been trying to lose some weight. It's been heavy going as I haven't been able to exercise or walk about much. It shocked me.
Chris was going to drive me to see my bestie this evening, as I wanted to see how I cope with it. But I'm not sure if I can make it now. My battery is empty. I can't believe a small thing like eating later can have such a big impact!?
If you taking drugs you must eat or otherwise the body start to give you signals . Perhaps your blood sugars was low. I forgot to tell you I started drinking red Bush tea as it has loads of benefits for the body and I love it. Just been to have my flu injection 💉 so let's see how I feel in a day or two.
Don't worry about your energy levels they will come back slowly. Just build yourself up first.
Whatever you do have a lovely evening and take care and stay relaxed 😌 chat soon xx
Aww, thank you Nipper11! Reassuring about my energy levels. I'll have to try the red bush tea, it sounds really good. I hope you are ok with your flu jab 🙏. Take care lovely friend xx 😘
Hi my lovely. Feeling very delicate today with headaches and feeling hot and cold 🥶 the flu reaction to the injection. So listened to a podcast . i will get through it . I am just Going to put a good film on and let that take my mind of me for a bit and enjoy. Hope you are feeling better today as I an sending you big hugs and laughter 😃 😀 😄 my friend. Stay safe Elaine x chat very soon xx
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Aww, wow! I can't believe you did this for me when you are so not well 💝 Thank you so much and I will check with my GP before I get some. Big hugs and wishes for your speedy recovery from the flu jab xx 🤗😘💐
Hi Nipper11 , thanks for your reply. I admire your grit!! I wish I could brave coming off everything slowly and treating pain holistically but for me it just feels out of reach at the moment as I have EDS, PoTS etc also and I’m told by my rheumatologist every time I see him that I absolutely have to keep moving to preserve my strength. There is always, always a trade off with meds though. I worry a lot about the effects long term. It’s a tough choice we’re faced with.
You are brave dealing with illnesses which affect your everyday life. You will work out your own journey when you feel your ready to do so. My advice is be kind to yourself and your body and listen to the messages it's sending you.
Take slow steps to improve your well-being and think about small changes you can deal with .
Do some research on studies linked to your illness so far they might have some self help tips to support you.
Look at Your vitamins intake and diet which might help your symptoms.
There are many people on this site who will always chat and support you with advise and care .
Look after yourself and stay safe . 🙏 god bless and chat soon . Xxx
Hi Winter_night, my GP prescribed gabapentin, 200mg 3 times a day for me and duloxitine 2 x 60mg caps a day. I am completely pain free now. I'm so sorry you are having so much pain. I would discuss what's happening with your GP. xx
Hi Elaine200756 , thanks for your reply. It just goes to show we are all so different. Lots of us seem to struggle with Duloxetine but I have heard from quite a few fellow EDS patients that it really works for them. I guess all we can do is find what works for us, but it’s a hard slog regardless of which combination we try! I find this forum really helpful for assurance and support.
Hello, Winter_night … I have been tapering from 30mg Duloxetine for 3-1/2 YEARS, and probably still have another year to go. Along that path, I have left behind migraines, and horrible ear noises, among other things. I still experience restless legs, and/or insomnia, but find these tolerable — comparatively speaking. I would never begin taking another drug, knowing my horrific experiences with Cymbalta/Duloxetine. I feel the manufacturer (which will remain unnamed here) is to blame for allowing production when testing indicated severe, negative reactions. Run, don’t walk, if any medical doctor tries to prescribe Dulox. for you, denying that extreme negative effects often exist. Further, my experience suggests to never start, then immediately quit, taking a medication such as this COLD TURKEY: the side effects could be even more horrendous …
I would just like to reply to your message to say before I started Duloxetine I asked the Doctor if they were difficult to come off them and he assured me that NO they are not difficult to come off at all. So I will cut down a bit and see 🤷♀️
Fern27 … I’m not at all surprised. Even now, my GP says, “Oh, you can just stop now … you’ve gotten your dosage low enough that it won’t hurt.” My Pain Management Doc has continued to prescribe the medication for my tapering journey for years! All I’ve ever read says that side effects get more and more intense the lower your dose gets when tapering … I’m at probably 1/4 or less of the original quantity of beads in a 30mg dose.
I would love to find a physician who has actually taken — and been through weaning off — this medication! (Just fyi, I reduce the latest count of micro/teensy beads in my capsules [every month or two] by only 5% of that number.
Remember please, this is just my personal experience as a patient. I’m not medically trained …
Yes it does hurt to reduce the dose of duloxetine but you can ask your GP to change the actual medication. I found that the duloxetine is vital for the 'medication cocktail' to work. I don't know why the cocktail works but if you withdraw one of the elements the fybro pain and stiffness gets worse again. Good luck and well done for trying to reduce your meds! 🙂
Thanks for your reply HyacinthBouquet1 . You’re right about the cocktail definitely, my GP calls it’s the mix and match and thinks I’ll have to keep tweaking periodically long term to manage pain. I’m coming out the other side now pain wise and returning to my tolerable level of constant pain that I can just about live with. Hopefully I’ve made the right choice. I think my ‘menu’ going forward will be rotating between amitriptyline and gabapentin with low dose cocodamol added to both for max effect. Either seems to work for me it’s just a case of swapping when I reach tolerance level after a couple of years (that seems to be the pattern).
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Painkiller options....
Fibromyalgia, meds and sweating
So much pain
