Hello I am 42 years old and since I was 30 I have been suffering a burning throbbing acheing pain all over body some parts are worse than others, back and fourth to doctors and tests Its been very frustrating as the pain is very real to me, my doctor has been very sympathetic. I also have silent migrains and have recently been diagnosed with Non epileptic seizures. I have also been diagnosed with Fibromyalgia finally!!! . keeping my spirits up despite pain. I have two children and a lovely husband so i have no option to let this beat me down. At the moment i am off work as I am having seizures, but the pain has increased alot so aswell as the duloxatine I am on for pain I have been given amatriptaline. what I want to know has any one got any other ways of dealing with this ie: food /exercise/ treatments. because on a scale on 1 to 10 the pain is at 11 today .
Hi Hazel, When my back was very painful I took everything I could and that just took the edge off. My back would go suddenly into spasm making me scream out then every step I took jarred it too. One day I took paracetamol, ibuprofen, tramadol and dihydrocodeine. It sounds like you need your meds reviewing if they aren't getting your pain under control. Others speak of warm baths, heat pads.
Hazel, my daughter has seizures and migraines and I have fibro. I believe they are connected. If you have had more than two seizures that is classed as epilepsy so I'm puzzled why the diagnosis is 'non epileptic'. Anyway I will cut and paste what I have already stated on another post:
I reckon I had fibro for more than ten years before being diagnosed. When eventually I was diagnosed, I was prescribed Paroxetene, an anti depressant which killed the pain but gave me an a la carte selection of nasty symptoms that I couldn't live with. I came off them and by that time I had learned the secret of magnesium. I had started taking Boots Calcium and Magnesium tablets with vitamin D. By the time I had been taking them for two months, I would say the pain an stiffness is controlled by 80-90%. I take double the RDA of two tablets (I take four per day). I also bathe regularly in Magnesium sulphate (Epsom Salts) - two cups full in a nice hot bath. For sleep I take valerian - again at higher than the recommended dose. These things won't work for everyone but most fibro sufferers are deficient in magnesium so nothing to be lost trying. It can take a while to build up in your system. My sleep pattern has improved greatly. I also liten to a lot of relaxation/meditation stuff. There is a great one hour countdown to sleep by 'The Honest Guys' available free on youtube and spotify which you can listen to via earphones.
For pain I now take Naproxene wich is high strength ibuprofen.
Go to google and try magnesium deficiency along with 1) Fibromyagia 2) Epilepsy/seizures and 3) Migraines. Epilepsy and migraines often go together. There are hundreds of specific diagnoses relating to different types of epilepsy. If there isn't a specific known type it is usually referred to as 'idiopathic epilepsy' i.e. epilepsy with no known cause.
i was very much better when i had weekly relexology [ lady retired now ]
no one eles has taken over ,so i have gone for accupunture
which helps with alot of the symptoms.
magneisum flakes from the sea bed helps with body pain as does magneisum oil applied to the limbs if you can take it internaly as well as a supplement that helps
plant based is the gentlist , i am also taking colidaul gold , and ionic minerals .
and i have a electric heat pad .
Thank you for your advice I love a hot bath so I will try epsom salts. I have had a cluster of seizures since 22 december and I have been reffered to a different nurologist now, long wait !!!. I am so grateful to have discovered this site, helps when people get it , so thank you.
Thank you for taking the time to reply . I have been put on allsorts in the past worked for abit then wore off. I am on duloxotine and last night I had my first amatriptaline doctor seems to think the combination will help.Today I am in agony hope that it wil start to help , think positive. how is your back now?.
Thank you for your reply. I will try reflexology and magneisum oil. I hope you are feeling well. Thank you again I appreciate the advice.
Mostly it's ok now. Occasionally it may spasm or ache terribly but nothing like it was! I had physio for a while but it seemed to make it worse. I hope the duloxetine works well for you. I took it for a while and it made a big difference for me within 3 days. I haven't tried amitryptilline as yet but could go with something to help me sleep a lot better as I don't get the deep sleep and I'm awake a lot too.
I used to think I had silent migraine. come to find out it was intracranial hypertension. it causes bad headaches but can cause body pain too. a lot of people with it have seizures. I think the diagnosis Fibro is an excuse for the doctors to stop looking for the actual cause of your symptoms. Dr. Gold showed that fibro gets better if you treat the sleep apnea. sleep apnea can cause intracranial hypertension.
iv just had my accupunture treatment ,and the ladie who does them said that she has a doctor who came to her thru her last pregnancy and has booked again to come for a second time while she goes thru ivf
she also has another doctor and several midwives doing courses on accupunture that come to her for training as part of there course so fingers crossed its getting thru that we should have integrated medicine
and theres training in alternative medincine on some medical courses to so lets hope it keeps moving in that direction .this might improve things all round for everyone .
a lot of doctors do a week end course in accupuntutre which is totaly pointless , three years plus regular up dates .
i would use magneisum flakes from the sea bed not epsom salts . much better natraul
Hello thank you for your reply. Thats interesting to find out. I dont get a headache as such thats why I was surprised when I was told I am having silent migraines I do however get pressure on the right side of my forhead, and feel nausea. I have had the pain in my body since I was 30 and I agree while my doctor was sympathetic , it was the same conversation every time I went and more pain killers. I sleep ok ish pee about 5 times a night and find it difficult to get comfy as pelvis hurts or back arms ect Even bought a new bed as adviced by one doctor didnt help use a cushion inbetween legs to balance out. Had tests for arthiritis / scans / ect ect. all came back negative. I am waiting an app to see a different nurologist so I will make a note of this. I am going armed with video footage a dairy and confidence in myself not to take any bull crap!!!!. Thank you
peeing 5 times a night is almost surely from obstructive sleep apnea. you are not waking up because you have to pee. you are waking up because you can't breathe, then you realize you have to pee. this is obstructive sleep apnea. some people with intracranial hypertension don't get headaches. but nausea is a common symptom. and since it is increased pressure in your brain, your symptoms are consistent. do you get a whooshing sound in your ears? pulsatile tinnitus is almost pathognomonic.
Hi, I know exactly how you feel. On a scale of one to ten today, I score 20.. I am still in my night atire as I don't have the energy yet to take a shower.. I am going to a Pain Clinic next week, not sure what they will do for me. I only take Paracetamol and Oramorph. If you read my earlier post on 'reading the leaflet that comes with meds' you will then see the reason why I have now stopped taking that..And obviously now suffering more..Can't win..
Hello , I to am in my night atire , pain level still at a ball acheing 11 . Trying to plan my day, In my head I want to go out shopping come home do ironing ect ect in reality I wont go out because of pain and carrying even a small bag hurts arms and shoulders. Just gone on amazon as I notice reading some of these comments people recommend Magneisium flakes and oil. I am going to give them a try got nothing to loose. It is frustrating I am only 42 had this pain since I was 30 it isnt fair, just have to learn to addapt to it, delegate jobs and rest when you need it and take dont overdo things when you can.Things just take me longer to do now but when I do I feel a sense of achievment sounds daft but clearing a pile of ironing makes me smile trouble is bloody ironing pile keeps appearing ha ha.
i am about stage 14 today out of ten , and iam still not dressed or showered either.
I sympathise with you, It is bloody hard and very debilitating. I have managed a bath and now back in pjs well I am not going out. Tried abit of Ironing and ended up having a seizure . now I have decided to sit down listening to my body. jesus if i didnt laugh about it I would be a mess.How do you feel about not getting a wash or dressed?. I take each day dont think I have worn a bra for a good while ha ha . Take care
Forgot to ask before I go spending my money do you find it helps?
still havnt motivated myself to shower i keep saying in a minute ,ironing hun
if it dosent have lycria in it i dont wear it , and if anyone eles wants something ironed well they no where it is , just scrape of the dust and use it , dont do ironing . i always get atleast 1 aday . but its hard work iv got a touch of sinus today and its driving me mad .
i havnt worn a bra for years its to painful
Hi Hazel...Not easy for us ladies to fasten a bra is it, on painful days...I finally got my shower and put clean night atire back on, so much more comfortable..