i was scared about long term meds,
so have put myself on extreme caveman diet, was warned pains would get much worse at first. ibs much improved but my headaches and muscle pains are so so bad.
all the crippling tingles and numbness and muscle pain is back with full force.
the good so far, blood pressure back to normal and racing heart/palpitations stopped.
but i can not carry on with pain like this. i am snapping at all and sundry and moment x
It may be obvious, but what do you mean by homeopathy?
I ask because I come across a lot of people who use the term homeopathy to cover many non-traditional medications or non-medication treatments, such as special diets or herbal supplements.
The following paragraph is from Wikipedia, but succinctly sums up what I want to say:
Homeopathy is a specific form of alternative medicine originated by Samuel Hahnemann (1755–1843), based on the hypothesis that a substance that causes the symptoms of a disease in healthy people will cure that disease in sick people. ... Homeopathic remedies are prepared by serial dilution in alcohol or distilled water, followed by forceful striking on an elastic body, called "succussion". Each dilution followed by succussion is assumed to increase the remedy's potency. Homeopaths call this process "potentization". Dilution usually continues well past the point where none of the original substance remains"
There is little evidence that homeopathy works as a treatment for Fibro better than placebo.
There is no way on a day to day basis I could have dealt with the pain levels without long term meds for pain and swelling. As long as you have a good GP and a pain management specialist you will be fine with the drugs given. Some of the homeopathic meds can cause more harm than good and cost much more!!! I, a retired nurse, will go with medical science vs the homeopath. But on the same note the services of a good bone cracking Osteopath are always a God send.
Just in case anyone is confused...
Homeopathic remedies contain no active ingredients (homeopathic "Arnica" actually contains no Arnica) and so are not harmful themselves. But they can be extremely harmful if prescribed in place of necessary prescription medications, e.g. for a diabetic, or for someone travelling to a malaria-risky area of the world.
hi lindsey, i think perhaps i have misused the word. i am trying with caveman diet and dietary supplements, along with medications for infections, fugal infections, etc
however i have been cutting out all my pain meds, i wanted to see if i could get the number of meds down, but i am in agony right now. major flare up for two weeks now.
i got scared when the gp told me my headaches were due to long term pain meds and she wanted to try me on beta blockers. i said i did not want to go on beta blockers. Barts hospital neurology and she was not pleased with me stating this.
kind regards
Hi Happe,
I have just had a look at this diet and the medical reviews of it.
This is just a weight loss diet and it seems not a very good one at that. It appears that there is nothing about it that will make your pain levels any better.
I'm sure if you had discussed it with your GP, as you should with any diet, they would have advised you accordingly.
As a retired nurse, I'm really not surprised that having stopped your meds, which on it's own can be quite dangerous, your pain levels are off the scale.
I can never understand why people accept that it's OK to take meds for any other condition, but have a problem taking meds to get rid of pain. If you knew an Insulin dependent Diabetic, who told you they were just stopping their Insulin and going to control their diabetes with diet alone, you'd tell them they were barking.
I think you should restart your meds immediately, go and see your GP to tell him what you've been up to and ask for an urgent referral to a Pain Clinic, where you can get a referral to a Pain Management Course.
There, you will find all the help you need to learn methods and skills to reduce the amount of meds you take, if that is still your plan, in a safe way.
Personally, I'll take anything that works until my 6 monthly blood tests tell me they are affecting something like my kidneys and/or liver, then I'll change them to something that doesn't.
I currently take 1200mg Gabapentin x 3, Tramadol 200mg x 2, Ibuprofen 400mgs x 3 and Paracetamol 1g x 4 per day, to reduce my pain to manageable and I take Vitamin D and Magnesium as supplements, because they are always low on my blood tests, which is quite common in Fibro.
Please make that appointment now.
happy hugs, kate 
dear all,
thank you for your responses. i suppose i am a little in denial, as the pains are so real and i used to be considered so strong. i remember going back to my GP after first being told by the london lupus clinic I did not have lupus (a half hour consultation, no tests, just looked at private rhummie blood results and then did a phyiscal check, trigger points etc), the doctor told me i did not have lupus and gave me a nhs leaflet on Fibromyalgia and told me to look on the net about condition as it was chonic and i would need a lifetime of medication. he put me on amitryptilin and others and wrote to my gp. i was feeling so ill and so scared as my fibro was really bad, if i walked the pain was so bad i ended up in tears, i had dreadful ibs, sinus infections, migraine headaches, sweating, lumps on my feet, numbness in my thigh, my neck pain was killing me. i cried all the way home from that appointment as i just felt so ill.
i went on to the net and could not believe what i was reading. it read like yuppie flue. stated how specialists were split on its cause and some thought it was psychological. i also went on fibromyalgia uk association web site and saw on forum how upset a lot of people were. it did not help my mother died aged 45 from misdiagnosed illness when i was 22 and i had seen the impact of her loss to my younger siblings and the heartbreak. the fibro uk association said it was a diagnosis concluded by omission (eg other specialist ruling out all other).
at the same time i was really worried about my beloved career (i had been overworked and under resourced for 5 years but i was a director head of a creative department and proud of my achievements, i received daily praise and won high profile awards). the response from head of hr was 'oh it sometimes helps when one is given a diagnosis, she was very patronising, as though it were all psychological. i sent her info from the uk association. but her attitude remained cold and then i heard through grapevine, work were saying there was nothing wrong with me. i ended up in a cycle of stress counselling, meds and worry. i considered myself so strong. i was convinced there must be something else behind all this.
all this caused me extreme stress and made my condition so unbearable, also the meds were giving me side effects but at the time having not really been on meds before i just thought it was more physical symptoms of whatever i was suffering.
after the london lupus clinic i went back to the doctor depressed and told her the london lupus clinic had diagnosed Fibromyalgia and gave her an armful of print outs, i said it was perplexing as it seemed the consensus of some doctors was it was a psychological illness, not a real illness but something like yuppie flue, but the pain i was in was real. she said i know it has the label of a waste bin diagnosis. i had never heard this term before, it horrified me as the pain was so so real and no one was going to misdiagnosis me like my poor mum. i had my two lovely children to think of and what about the career i had worked so hard for.
so again i go on the road of specialist, my work private help would only approved psychiatric help, then refused even this saying pyhchiatrist thought i was suffering dissomatisation. any incurable mental illness. i was outraged and now understood why work were so dreadful. i went back to psychiatrist to berate him and told him these pains were real. he told me he thought i had CFS but my private health would not cover a chronic condition. he was a really nice man and i was so fragile by now. i just broke down in tears. why did not one believe me (just like my poor mum, whom had been told she needed to eat more fibre in her diet and to buy all bran, it turned out she had a benign growth on one of her overies, they operated and a week later after complaining of extreme stomach pain decided to take her back down for investigatory second op and found all her intestine had become perforated and therefore they removed her small intestine, large intestine and bowel. she was left with just four foot of intestine from the stomach. we were told she would likely not come round from op, but she did and was out of pain for the first time in a year. she looked so well but told me as eldest to take one day at a time and to look after family. she died 3 months later of septicaemia weighing less than 6 stone. it took me two years to overcome this grief but i did and i promised to fulfil my promise to realise my potential and built a strong career and flew through promotion. i became the mum of the family too. everyone came to me to sort their problems. i enjoyed this role. i was proud of myself.
though out all 2008 when i first went sick from work, my health just keep getting worse. i remember one neurologist saying there were losts of tests for headaches he had to do after sinus op was completed and my gall bladder was also removed, biopsy showed CHRONIC CHOLOECYSTITIS. yet for five months a general surgeon told me tests said there was nothing wrong with my gall bladder but i was being sick suffering stabbing pains, sickness after eating. i had insisted on a second referral before diagnosis was achieved and op conducted, the surgeon told me after op, he as very sorry as it was obvious i had been suffering a very long time. he said he also thought i had a third connective tissue disease but these were hard to diagnosis and could be difficult to treat. i was referred from one specialist to another.
i suspected overwork had broken my body through neglect of my well being. i had complained constantly to no avail. then when they finally agreed to restructure and i was given a management role, that weekend i thought i was about to have a stroke the headaches were so bad, i had extreme pain in my abdomen and was physically sick every-time i ate (gall bladder). i could not walk without pain and my neck was killing me.
i wish i could show you the list of specialist i was sent through it is outrageous and the number of scans investigations etc i have endured. But i expect you have all been there, mine i think was so bad as it was in such a short period because i had access to a private health cover and i knew these pains were real. i was not going to end up like my poor mum and i knew it was not mental illness. the stiffness and pains came on even if i was having a fun good moment with my family.
so three years down the line, having tried to get involved in bringing justice and awareness about and getting no where, my relationship crumbling. i suppose i have become desperate to find answers and relief. i do think there are a lot of symptoms caused by the dysfunction of digestive system and lack of nutrients and developed sensitivities causes allergies that absolutely should be part of treatment of fibromyalgia. it was dr myhill paper on hypoglycaemia that stuck an immediate cord with me. she not only discussed symptoms i had which were not listed in fibro uk, but she gave rationale which made logical sense to me.
recent gp tests showed i had low folic acid through poor gut absorption. i eat not processed food for years now and try to keep to a very health diet, but each year was putting on a stone in weight. that means i have gained 4 stone in weight. my twin sister even came with me to gp as she was knows how hard i work on diet and how much less i eat compared to everyone else. allowing for the lack of mobility it still seemed dreadful weight gain. my gp had no answers but to cut down on food further.
this is why dr myhill/accumens laboratory, mitochondria tests and gut tests have been so good, it explains why my system is working at only 10% of that of a healthy person. I have many gut problems, like poor pancreas function, dry stomach. overgrowth of candida and fungal infections. her meds and supplements have definitely helped with these other symptoms.
without treatment for these other conditions i believe our health is at serious risk. my gp stated that there were no homopathic hospital on the nhs, i believe this is because of cost, because i know there is. it has been difficult with my gp as going in saying you think this and that just goes to their view you are obsessive and my gp does not respond to this. this is why lindsey guide on being an expert patient is so good. however it is dreadful we have to deal with people who have promised to listen to their patients and should be putting patient needs over cost.
so finally getting back to meds as my blood pressure was increasing and i was getting heart palpations, so my list of meds was kept growing i decided to take action and find out what more i could discover. i knew i was putting my health in my hands by cutting out meds and trying diet, but i have learnt the hard way that some of my symptoms are caused through gut dysfunction however not all. i have managed to get my blood pressure back to normal
my chasing heart rate lower. my skin conditions have improved too. however the sensitivity to nerves, muscle pain, eyes, ears, sinuses are not resolved by this and the pain is getting worse so i will be restarting my meds from rheumy and not the beta blockers and opiates from gp.
there is a lot of good from natural foods, like walnut for blood pressure that have worked for me.
I believe diet and bio-chemist testing on gut should be an absolute essential part of fibro management. allergy management. skin allergy testing is not enough.
i have no doubt my story is similar to many here. just writing it helps and i hope explains why and how i have travelled this long four year road so far. i have now lost my career my marriage is struggling and i continue to be in great pain. but like all i manage to laugh about something no matter how small and have developed quiet a dry sense of humour which no all understand but it is the way i cope with it all.
well if anyone reads all of this mini book i salute you!! we all have our own worries and i wish i could do more to help suffers with this condition too.
ps kate i have made that appointment with my gp now xxx
sue i regularly get infections and if i catch an illness like cold, flue etc from family i am in agony and in bed. so my immune is compromised. one rheum at the beginning told me he thought i had autoimmune triggered due to the skin conditions and infections. the problems with nhs the appointments are so few and far between we regularly end up in a and e as i feel so bad, with pain and sweats etc, lumps in my feet and wrists. i did not take anti-autoimmune meds when prescribe in first year as i read they can cause cancer. opiates are not good for you long term. now i am awaiting appointment to UCL a referral from guys. but a letter last week said it is going to be some months before they will be issuing appointment.
there are so many symptoms, the rows with my husband i know make things much worse. i would leave but am scared how i will cope and where we (myself and my daughter) will end up. i have already lost so much and could not stand living some where else.
big hugs xxx
then of course the guilt of the sadness i have already caused my children. their loss has been immense too. i was so on top of things always, went to gym with them, i know i did not ask for this illness but that does not change the fact as a mum it is dreadful to be the cause of such suffering to those you love so much.
I've just asked the question whether homeopathy works but then come across this blog. Whilst there may not be evidence that homeopathy works I know people who have used it and say it does. Might be the placebo effect people say whereby we get better because we expect to - yes, but an example - From birth to 6 weeks my daughter was constantly screaming, choking on the bottle, struggling with breathing, getting nasal infections. A locum GP said that by looking at the build of her nose she was clearly a cataghral baby and he recommended trying homeopathy! I took my daughter to the Homeopathic Clinic in Manchester, they asked lots of questions about her personality, then gave several different potions. I was sceptical but within a week her nasal inflammation had disappeared as had her catargh, the breathing difficulties ceased, she slept well and began to feed normally. No, that's not evidence, but I would certainly consider trying homeopathy again for another problem if a few people have found it helpful. My son lives in China and is prescribed homeopathic medicines for all his ailments, it's the norm there. Must be something in it. It's so easy to be sceptical about something if there's no empirical evidence, but because we can't see it, or measure it, doesn't mean it doesn't exist.
Has anyone stopped taking Lyrica (Pregabalin)
Has anyone heard from Blue52
Has anyone else had pain when breathing in, due to fibromyalgia? 
Has anyone been given Levothyroxine tablets.
Has anyone tried yoga?
