Trying to find out about causes of Fibromyalgia
Posted , 16 users are following.
Fibro has a huge range of symptoms yet nobody seems to know what causes it. I want to ask if anyone can remember anything significant happening before their Fibro problems started.
I sometimes read that it can be triggered by trauma such as a car crash or it can seem to begin after a viral infection. Can anyone here think back to when their pains began and then to a time maybe in the year or so before that when they underwent an operation, or were involved in some kind of accident or had an illness?
I'm not affected myself but I'm very aware that so many people are seriously affected by 'mystery' illnesses yet their doctors don't understand or don't want to know. I firmly believe that many of these 'mystery' illnesses are actually caused by some drugs that are prescribed in good faith! The doctors then make things worse by giving other drugs or they tell you it's all in your head and you're imagining things.
You are not imagining the lists of pain and suffering that I've read here and also in other sections for other illnesses. Many of you have been told you also have auto-immune problems such as lupus and I do believe many of these things are connected and some of them (not all) can be traced back to hospitals and drugs, particularly antibiotics.
If you can help me by posting anything you can recall about the beginnings of your problems - along with anything that happened in the months before that - we may be able to find something that the doctors are missing.
N.B. I'm not a journalist or any kind of therapist. I'm not trying to make money or make fun of serious conditions such as fibromyalgia. I'm concerned about the possible causes and feel not enough is done about trying to prevent others from suffering in this way. Please reply if you can.
0 likes, 30 replies
smc187 miriam65408
Posted
hey everyone,
i developed mine after being on medicine called Roaccutane for acne which was highly controlled from the hospital at the time.
it had many side effects and its known to case what they said is 'mild muscle pain' as many on here would agree mild is far from what we suffer from.
so that all started 2014/15 when i was 23 i actually started it on my birthday.
the consultant has written to the manufacturing company for this to be changed, makes me wonder if there is others.
my life has been turned upside down and have have to put the breaks on so many things but thankfully i have a amazing partner before all this started and he is still he even after it. if anything its made us stronger!
its hard to say dont let it bet u/us but its hard as we all know.
xx
miriam65408 smc187
Posted
Hi, Thanks for the reply, did you know there's an acne forum on this site? I found out when I was searching for Roaccutane!
https://patient.info/forums/discuss/browse/acne-197
I had actually heard of it before but in another context more to do with depression. Muscle pain wasn't mentioned so I was surprised to hear about this side of it. Actually, I shouldn't be surprised as I keep hearing about all sorts of drugs having all kinds of effects.
Have you actually been diagnosed with Fibro now? I very much admire you for your positive attitude and it sounds like you and your partner won't let it beat you. I wish I had a light to help guide you out of this tunnel. Stay strong and take care.
smc187 miriam65408
Posted
yes i had a fast track diagnoses as the dermo consultant had treated my dad for over 20 years and let then try a lot if new meds and mothods.
on the acne thankfully im not as bad as i was but i was cystic from 13y. that drug is the devil in my eyes. reports people have took the lives while on it is crazy. i didnt know any of it until after i had my problems.
i know theres a link with depression but i was lucky i didnt have that problem to be truthful my anxitey and depression came just before and after my diagnoses if fibro.
strangely i got some info from a customer that my partner had last week. he drives for a living, she too has fibro and is active looking for into on it.
her research found an interesting thing on anesthetics. what she found is that some dont have an effect with people with fibro.
the reason we found this interesting was i had a tooth removed last monday that wasnt planned and i was unable to get out under due to my meds and then had to do it away.
my dentist who is amzing was more than confused why the anesthetic wouldnt work, this was after 7 of what the called the gold. she said i shouldnt have been able ti talk let alone feel anything.
im going to do a new thread on the anesthetic as i feel that people should hear of this
thank u for ur kind words
xx
mika06482 miriam65408
Posted
i was about 15 when the symptoms first started, it was only on the upper part of my body- shoulders, arms, neck and face. did not know what it was back then and I just learned to live with it. it started after i had suffered from a Plantar Wart (Verruca Plantaris) which is caused by the papilloma virus also known as HPV. it took me almost a year to get rid of the wart- it actually started to grow like a plant or a tree roots inside my foot- and heal from the laser treatment that finally 'killed' it. 10 years later when I was 24 I was in a really stressful time because I started to live on my own and I had a huge fight with my best friend that cost us our friendship which ment a lot to me.. and that's when the symptoms started all over my body head to toe with sleep disorders , mood swings the whole package and its still on till this day -i'm 32 now and i guess its here to stay cause viruses stay in your body forever- if its really the cause. so yes I think there's definitely a trigger and probably A few things we can do to try and manage the symptoms in our daily life and that's what I try to do . keep the people and enviorment stress free as much as possible.
miriam65408 mika06482
Posted
Hi Mika, thanks for replying.
This is interesting as someone has already mentioned the shingles virus and now you have said about HPV. I've just had a quick look on Wiki and, while these two viruses are not the same they both come from the same family. In the few replies I've had so far I think the common theme is one of various things causing stress to the body. You seem to be doing the right thing by trying to keep your life as stress free as possible. I wish you well, take care.
christine26761 miriam65408
Posted
MINE WAS A HUGE TRAUMA TO THE BODY AND MIND!! I HAVE RESEARCHED IT AND MOST OTHER PEOPLE HAVE THE SAME?? EITHER A SICKNESS! OPERATION OR A SHOCK MINE WAS 3O ODD YEARS ..I CAN PINPIONT IT??
miriam65408 christine26761
Posted
Hi Christine, thanks for replying and I do apologise if my post has made you angry and upset.
Doctors don't seem to care about the suffering that's going on and so it's left to people like me to try to find out why it's happened - and still happening. If enough people can remember something that happened before their pain started then we might piece together the puzzle and perhaps prevent it from happening to others in the future.
libralady13 miriam65408
Posted
Hello Miriam and all fibromyalgia suffers
I should first say that I have never been diagnosed but my gp after an examination tells me that I have quite a few of the triggers points for fibromyalgia. I must say all the poking and prodding did hurt. she has offered a referral to a rheumatologist and I am thinking about it. I also have osteoarthritis arthritis in knees neck and spine and other health problems. I realize you can have both oa and fibromyalgia. I have thought about all that has happened to me over the years and have come up a few things which could be contributing factors.
I don't know if I do have fibromyalgia or whether the pain I get is from arthritis etc. I also have stomach problems Ibs and gastritis. I believe ibs is often part of fibromyalgia.
Finally can I wish all of you the very best. I commend you in coping with this awful condition. Thank you Miriam for posting the question and being interested in trying to find out the possible causes of this syndrome.
libralady13
Posted
Sorry I forgot to mention viruses. I had one in 2007 just before my 60th birthday which lasted 2 months and left me with awful mucus in the throat eventally diagnosed at perennial allergist rhinitis. I had another one which lasted a few weeks last year . May not be relevant but never know.
miriam65408 libralady13
Posted
Thanks for your replies, LL, and also for your encouragement. I think we sort of know that "Fibromyalgia" is more of a catch all term that describes this awful, all-over physical and mental pain condition that our bodies seem to be able to generate when faced with stress, trauma or invasion - e.g. from toxins or viruses. I believe that many theories are working on the lines that our self-defence mechanism gets switched on, overloaded, and then can't switch off .
I know from your other posts that you are hoping to solve your IBS symptoms and I'm quite sure that nutrition plays a very large part in all of this. I wish you all the very best and hope that you - everyone - finds some improvement soon.
Anxiousdove miriam65408
Posted
I am still not diagnosed but suffer from pain on thighs, knees, bicep and upper back few days every month. All symptoms I have looks like fibro. Mine started after an stressful period and emotional trauma. It all started after my mom had brain stroke, i could not cope up. On top of that I suffered from intrusive thought and health anxiety, which b gave me panic attack and then it blew up and gave me weird symptoms in sept 2017 like numbness, electric shocks, sudden pain, ants crawling feeling all over body, tightness in legs headaches, tight band feeling on head, sensitivity to light and sound, blurred vision..in 3 months except for pain. Now I get pain like 5-7 days a month ranging from 2/10 -6/10 pain level. I tried modern medicine, homeopathy, tibetian herbal medicine nothing worked.
I read few articles says your autonomous nervous system is damaged after repeated trauma and stress. Therefore our brain misfires pain signals even though there is no damage to body.
I am thankful that I am able to work full time, manage home as I dont get pain daily.
I read some where hypnotism and cbt, meditation will help to some extent. I am going to try ayurveda as well to see if yhat works.
The last thing we should do is be more stressful due to symptoms which causes cycle of never ending pain. We should talk our brain and tame it that I understand I have pain but I will not feel bad about ut and I will get better. Otherwise we would cause ourselves more pain..
My heart goes out for each of you who are going through this.
Lady GaGa is inspiration, inspite of suffering from it. She dont let it affect her passion
Do things you love like gardening , painting..
miriam65408 Anxiousdove
Posted
Thanks very much for replying and what you say makes a lot of sense. I guess you've been asked this many times but do you think your pain coming in monthly cycles is hormone-related? I'm sure all of the body's systems are caught up in all of this including the endocrine (hormone) system which would account for the thyroid and blood sugar disturbances people report as well as any monthly problems.
I love your phrase 'talk to our brain' and I have always said that to keep a positive attitude through meditation or just simply thinking happy thoughts raises our seratonin levels. On the other hand pessimism and depression, or simply allowing our thoughts to roam freely in those dark places in our minds, encourages anxiety and panic and this stimulates our inflammation response which can lead to all manner of physical problems.
I know it's very difficult to cope when life throws too many bricks at you at one time and to have your mum suddenly ill is not something you can make light of or keep a cheery disposition. It sounds like you are doing very well so please to keep it up and stay strong! I do love gardening...
debbie161161 miriam65408
Posted
Wish gardening would help, but too much pain to even think about attempting the garden. Used to be my time to de stress now I just sit and watch the weeds grow stressing. Vicious circle.
Squidgys_nan miriam65408
Posted
hi miriam, ive been diagnosed with fybromyalgia for five years now.I was diagnosed 5 years previous to that with a underactive thyroid condition and had no problems at all until i had a car accident in 2012 has a passenger a car went straight into the back of us full pelt whilst the driver was on her mobile and we was staionery in a traffic jam and was shunted forward i had whiplash and trouble with my back for a couple of weeks went back to work and had chronic migraines and wide spread pain and got put on cocodamol30/500 2 tablets four times a day, blood tests showed my thyroid was unbalanced for quite a while and neurologist diagnosed hasimotos as i have a B12 and iron deffiency too and vitD I TAKE MEDS FOR ALL OF THEM ,ive been told by pain management and the neurologist i saw that the car crash i had excacerbrated my immune system to mistakenly attack my thyroid since then i now have problems with my balance.pain in my lower back and hip when i walk and i walk with a crutch i have bad migraines and nausea and have to go to bed i also get pain in my right eye and ear when i get a migraine i also get muscle spasms in my arms and legs pain in the soles of my feet and heels i have bent over toes and get burning in the topof my thigh also on the right side i have problems with my speech sometimes and very forgetfull i also drop things a lot im on metoprolol and migramax for my migraines , levothyroxine ,ferrous fumarate and folic acid 400mcg .amitriptylin 50mg ,sertraline 200mg, paracetamol ,omeprazole 20mgbtwice daily,rosuvastatin 20mg weekly,tramadol 100mg four times daily cetirizine for my problems withmy skin which i never had before, terbinifine 250mg and colecalciferol 800iu sorry this is so long hopeit helps
miriam65408 Squidgys_nan
Posted
Hi, I'm so sorry to hear that you've had all these problems since some foolish woman hit the car you were in and my goodness, you are on a lot of meds since then! I can see that the whiplash would cause some serious problems as our necks and heads are really very vulnerable in this type of accident. I also understand that this would kick off wide spread pain and lead to a diagnosis of fibromyalgia along with migraine and a worsening of your thyroid problem.
You haven't said if you were given any medication such as antibiotics at the time of the crash (any drugs given before fibromyalgia is what I'm most interested in), although too much cocodamol is not good for your digestion - as you probably found out. I think what the doctors told you is probably correct and your immune system is now over-reacting and this seems to be a theme in all of these replies to my post.
I would be very concerned about the cocktail of drugs you are currently taking and think the doctors must just keep adding more and more to your list instead of trying to find out how to actually help you! Have you had a proper drugs review lately? One where a pharmacist looks at all the interactions and side effects? I'm not a pharmacist but, for example, I have learned that omeprazole interferes with the way you absorb other drugs and also your essential minerals and vitamins from your food (especially B12). Iron, too, is hard enough to absorb anyway so this can't be helping. Most people are given omeprazole or one of its relatives (eg lansoprazole) for excess acid but studies have shown that the heartburn etc. is more often caused by too little acid so these drugs just make the situation worse - your body is always trying to produce more acid to beat the drug!
Meanwhile Migramax and statins are not supposed to be used together, Tramadol can make you very forgetful and dizzy and probably something here is upsetting your skin!
You might find it helps you to have your meds looked at in detail and perhaps a more efficient combination could be given.
Thanks for replying, it has helped me and I do hope this has helped you. My mum was on a similar cocktail or drugs all working against each other and, when I asked her doctor about it he said if it's working there's no need to change it. I pointed out it wasn't working as she was getting more ill (she was diabetic) and things like the lansoprazole shouldn't be taken for more than 4 weeks according to the leaflet. It turned out her doctor had no idea why she'd been on it for the last 5 years!