I have found some really useful information for anyone wanting to try to manage their symptoms by self help. If you try searching under - CFIDS Fibromyalgia self help - there are lots of useful articles, tips and success stories. Hope its of use to some of you out there. x
I'm sure there is GOOD help info there, I have used ONLY self help since the dx in 1999.... joy 76 US
Denise.
Thank you for the info. I went to the official site. It has a lot of research information, which is awesome.
The webinar series to help us manage our symptoms looks promising as long as it's not one big advertisement. In my experience, like with Functional Bioanalysis, there are practitioners but the site gives you a wealth of information for free - without trying to sell you anything or get you on some kind of drug.
Thanx so much for the info Hun. I have also looked up some books on amazon. X
Hi Denise, thankyou for the info on that site will have a look on there before i see my doctor on Thursday as he's going to change some of my medication around. Ive been told that amitriptyline , pregabalin and tramadol are quite helpful with fibromyalgia. Has anyone else heard about any of these meds? What other meds does anyone else take?? Alex.
Hello Alexis,
I don't know about the other meds, but my Doctor will only prescribe Amitriptylene, as he says other have horrible side effects. Also none really solve the problem from what I have read on this website. I find amitriptylene helps with sleep and a certain amount with pain. I am thinking this is the best it can get! Others seem no better of with truck loads of drugs!
Take care,Anne
Hi, from the parts I have looked at it does not seem to be one big advertisement. There are sections on pacing, exercise, supplements and lifestyle changes.
The supplements info is very interesting as it tells you what each supplement does.It mentions quite a few of the supplements that Joy takes (previous post) It also suggests only trying one supplement at a time so you can see if it has any positive benefits on you. It also suggests stopping each supplement for a short time after taking it for a year to see if you are still benefitting from it. I don't take many supplements at the moment but this seems very sound advice so I think I will investigate this further.
I have also looked at books om Amazon. It is really good when you can look at the first few pages of a book before deciding to buy it. X
Hi Alexis. I agree with Annes comments. I am also only on Amitryptyline. I started on a very low dose (10mg per night and then slowly increased to 25mg) It helped with my sleep and some of the pain straight away but took a while before I was well enough to return to work. It also made me very groggy in a morning so I take mine at about 6pm and this still helps me to sleep. I have managed to reduce to about 12.5mg per night but I have made a lot of changes to my life. I have reduced my working hours, changed my exercise to suit the illness - Tai Chi and walking at the moment, taken a course of CBT, been on mindfulness course and I also do gentle stretches most days. I am not pain free but my life is much better than it was 9 months ago when I was diagnosed. I hope your medication helps you - it is the first step on a very long road! :-)
Hi Anne, I agree with all your comments. I know Amitryptyline doesn't suit everyone but it has helped me get some kind of life back - not the one I had planned but definitely better than the one I was living 12 months ago.:-)
If you are going to take meds, that is the most common combo for fibro. But most people can't tolerate one or another, it seems. And all 3 at a time are pretty harsh on your body.
I have been on all of those. Amitriptyline I am on 30mg, started at 10mg I think. That has certainly made me a bit more flexible first think in the morning. I went from crawling to lumpy few steps. Pregabalin was good but I had to stop cos I have Functional Movement Disorder and it was giving me seizure like problems (exactly what it's not supposed to do. Lyrica did the same). Tramadol just started and it's certainly helping with the pain.
Good Luck
Yes I totally agree. There is no point in buying a book and finding out that it is not going to help at all. X
I have too and for years they have keep my mobility up. There r limitations.,there is no cure. There is our fighting spirits that can be positive and help tremendously.
no pain meds help to many side effects or I am allergic to them. Bios r not on the market long enough for me. I have read every study since 2010 and I'm not ready to accept them yet as I have read too many who have explained their side effects and suffered set backs.
also read many success stories on bios yet they stop working after a time because the body builds up antibodies to the drug then they no longer help.
Hi Alexis, I have Fibro, along with the usual bunch, IBS, Sleep Apnea and Rheumatoid Arthritis (RA), for over 6 years now and am 63 years old still starting work from 7.0am till 5.0pm. One of the essenrtial things is to make sure you have monthly bloodtests, as some medication can affect the stomach, as well as surpressing imunity.
Until 6 months ago, I was on Methotrexate (RA) & Hydroxychloriquine (RA), Omeprazole (stomach), Folic Acid (stomach + counter Methotrexate), plus the usual pain management of Gabapentin + Paracetamol, Tramadol, 75mg Amiltriptylene (to help sleep ?).
My usual monthly blood test included a test for CRP (Creative Reactive Protien) which is normally 41 mol in a band from 10 - 50 mol. Suddenly, this jumped to 1825 mol, ringing alarm bells at my surgery, with me getting phone calls after 6.0pm that dat, saying not to continue Methotreaxate, which I usually took on a Saturday for just this reason.
I was then taken off Omeprazole onto Peptac Pepermint Solution (yuk), which caused more stomach problems, so after 5 months, I went back onto Omeprazole. Problem with this is you can't take Gabapentin until two hours after Omeprazole.
For pain relief, up to 3600mg of Gabapentin a day plus 8 X 500mg Paracetamol is what I am allowed, currently on 2400mg Gabapentin. Amitriptyline can help sleep (up to 100mg per night) plus I take 10mg each morning to start the pain support.
Most of my pain is knees and thighs, I had accupunture through the NHS Physio, and that was a great help, as it stopped the feeling of tearing off skin mainly down the left leg at night. 10% Ibrupheren spread on painful joints can help (prescription only) and use the free gloves at petrol stations to apply, or you rick touching your eyes or mouth with traces still on them.
Rhus Tox Cream from Weleda also helps if pain specifically within one joint. The tablets which I use for my arthritic spaniel don't have much effect for me, but maybe worth trying.
I also get waves of pain through the muscles and bones in my right arm, down to and including the carpel and ulner tunnels. I find slight compression uning sport support items does help manage and greatly reduce the pain, I have one arm tube which I wear all day plus hand supports which last about 6 weeks due to wear and washing.
There's a lot in the reply, which I hope also helps others where their GPs are reluctant to prescribe. Not everything suits everybody, it's a case of trial and error, but there is good support medication available, plus NHS Pain Clinics, push your GP to more actively managing you, this has been the best thing for me.
Hi Denise, as I said towards the end of my reply to Alexis, get your GP to actively manage you, trial various types of medication, I have mentioned a few that may be worth trying. I have also found drinking slim line tonic water is good for cramps and background muscle ache, the best cost/effect is from 'T's.
Rhus Tox cream can be a help, Rescue Remedy drops for help with colds, charcoal for indigestion. When you start trialing something, keep a diary from day to day, then you have evidence as to its benefit or side effects.
The most important is to be positive and keep going, don't give in no matter how painful.
Hi, thanks very much for your reply. I think you do really well to work the hours you do.
I can’t take much in the way of medication as even low dose Amitryptyline makes me drowsy. If I was taking a lot of medication I would not be able to function at all. I have decided to go down the route of pacing, gentle exercise, rest when my body needs it, meditation and spending quality time with my family. Only time will tell if this works for me but my rheumatologist was very encouraging.
I will have a look at the cream you suggest as I have not heard of it before. (I also suffer from OA and have done since my 20’s) I have just been given wrist and thumb supports so I hope these will help me.
Chronic fatigue is my biggest problem but I am better than 6 – 12 months ago. I will do my best to remain positive as I know I am slowly improving.Thanks again.
I've been on all three. I'm still taking pregabalin 75mgs 3 times a day and amitriptyline 10mgs once a day. I was on tramadol for a month or two but it made me really drowsy and didn't help much which is not exactly what you want for daily living haha. I mostly get pains that feel like I'm being tasered which were crippling but since I started on pregabalin a few months ago it's really improve my quality of life. I can be sort of human again for the first time in over a year. I've only been on amitriptyline for a few weeks, I haven't noticed any improvement yet but I'm going to give it another while. I also take ibprofen 3 times a day or asprin 3 times a day for my headaches, aches and the arthritic pain in mainly my hands but in joints too.
I think the meds depend on the type of pain you get and your bodies reaction to the meds 
Hi Denise,
Since April this year, when my GP looked for an alternative to using Lidocaine 5% gel, he prescribed Lidocaine 5% patches (packs of 5). These you can cut to any size/shape, as there is no border because the whole patch is adhesive.
Initially, I kept putting strips where the pain is, and it did reduce pain levels at that point, but not completely.
I have found that by identifying the pain line, the route that the pain message follows, putting a small patch over this line is more effective. Basically, put the nerve carrying the message to sleep for 12 hours, and you have a breathing space to relax and be pain free.
I put a small 2inch x 1inch strip across the back of my leg about 2inches above the ankle bone, and this stops the painful cramps in the calf muscles from reaching the brain, when out walking the Cornish Coastal path.
I have constant pain from the bottom of the right knee cap, which makes the nerve running up the inner side of my thigh very sensitive. A 3inch x 1inch strip across this sore line just above the knee, cuts of the message to the brain. This is more effective than numbing the actual pain point.
Worth a try if your GP is working with you.