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so much to take in about fibro any advise please read this
8 Replies
Hollie733 - January 2

I was diagnosed with Fibro 2 years ago but judging by my past history i have probably had it for a lot longer (in 2007 i had a bad car accident). I am now 25 and even after been diagnosed 2 years ago i feel that i am no further on with understanding this dreadful illness. I live in the UK and my doctors are non supportive some of them do not even believe it is an illness at all, i have been offered very little medication only amitripylene anti depressents which in actual fact had the opposite effect and made me depressed and have terrible mood swings. I am lucky that i do not suffer from pain everyday i just have bad flare up's every few months but when i say bad i mean extreme rolling around in agony its horrible...i seem to suffer more from fatigue which i might say is equally as bad it is just a viscious circle for me i go swimming before work to keep the pain at bay i then work 9-5 come home and i am shattered i am then suffering from excema because i am drying my skin out from all the swimming. Does anyone also find that if you have something planned that you are looking forward to by the time it come its like all the energy has been drawn out of you??? then the pains kick in. My work at not supportive they do not understand when i say oh am tired colleagues are just like yer me too i just think this is severe fatigue not just your normal tiredness and its not as if you can just ring in and say i'm not coming in today cos i am too tired and believe me there has been many a time when i feel like i have i needed to. I have sat at my desk at work sometimes crying because the pain is so bad, but i always say i refuse to let it beat me but it beats me everytime and i end up having to ring in sick. I get married in June this year and i am worrying about been ill on the day from all the excitement and stress. After the wedding we plan to start a family but i am scared at how my body will cope not so much with the pregnancy but more afterwards i am already tired so how will my body react having to get up with my baby all the time as i plan to breast feed. Any support would be good, please only down to earth and your own experiences no medical reports as my brain cannot cope with it.


January - January 3

Hi Hollie - so sorry to hear you are having trouble finding a supportive medical team and you are struggling with this illness alone. Accidents or illnesses often trigger fibromyalgia. Doctors now seem to be caving to pressure from drug companies, and once you have the label "fibromyalgia" (which really used to be a disease of PAIN) now you are treated like a mental patient and given antidepressant drugs that interfere with your neurotransmitters. Don't know if you are still taking them or if you quit - but if you quit, you go through withdrawal and that is painful and makes you feel bad emotionally too. (It will eventually go away, but it might take a while…) If you have recently quit, you might google "the road back" - they are a good support group for getting off the drugs.

Like you I had a horrible time with antidepressants and am better without them. I was in several car accidents also. Have you been evaluated carefully to see if you have any residual back injuries? Whiplash can last for years and years due to the muscle imbalances it causes. And you might have herniated disks that will only show up with a good MRI.

From other things you mention in your post, I wonder if you might have something like food allergies (which can cause pain, skin problems and mood disorders) and sleep disorders (which cause exhaustion and pain). A lot of us have been helped by taking good sleeping meds like Ambien. Also many of us have had considerable pain relief by getting rid of allergens in the diet. Often the problem is wheat and other gluten-containing grains. If you haven't checked into celiac disease and gluten sensitivity, please do so. Most doctors think it is a diarrheal disease, and it can be - but there are lots of celiacs walking around who do not have GI problems, rather their main symptoms are PAIN and depression. 97% of celiacs go undiagnosed - your doctor probably won't think of it, so you will have to educate yourself and request testing. You may have to print off information and show it to the doctor. Even if you test negative, you might want to try the diet and see if it helps you. It is not that hard, you just have to learn what to avoid. Substitute rice, corn, potato and tapioca for all wheat and regular cereal grains. Do not eat anything processed that has "starch" in it, unless you know the starch is gluten free. Learn what condiments to avoid. No MSG. No drugs with gluten. Call the companies and ask. It will take 8-12 months for you to really see a difference on this diet, as if you are celiac, your inflamed intestine has to heal and your body has to rebuild itself.

It's unfortunate, but you are encountering what many of us do - medical professionals who really don't know much about fibromyalgia. It is not one single specific disease entity - rather, it is a "syndrome." That means it is a cluster of symptoms that often occur together - but we all have different clusters of symptoms. Our fibromyalgia has different causes, ranging from physical or emotional trauma to viral illnesses to food allergies, and more. (You might also want to get tested for viruses if you have been very sick, even if it was a while ago - some people think Epstein Barr Virus or Lyme Disease is linked with fibromyalgia.) If you can figure out what is causing your pain and treat the root cause, you WILL get better. However, the burden is on YOU to educate yourself. Hope you will read the posts on this site - there's a lot of good information from many different "types" of fibromyalgia people.

You should get yourself a notebook and start keeping a journal of your symptoms, your sleep, your pain level, your skin problems. You might also want to keep a food diary. Research allergy elimination diets. Get a test for gluten sensitivity (although these can come back false negative, you MIGHT get a diagnosis, so it's worth a try if you are still eating bread and flour, do the test now before you quit.) Read the posts on here, and if you have questions, just put the words into the blue search box on the right - it will pull up relevant material for you.

YOU have to do the work to get yourself better. You will have to find a doctor who will work with you. I educated myself, quit the usual antidepressant drugs, went gluten free, and now take a lot of supplements and some low dose older drugs to help me sleep and treat pain. I am a LOT better than I was! But really, I did most of the work and research and carefully kept notes about supplements I tried.

Some books that people have found helpful are Fibromyalgia for Dummies, Dr. Jacob Teitelbaum's From Fatigued to Fantastic and Dangerous Grains (which you can google online). There are also some good fibromyalgia doctors that will help you online, they will order testing and consult with you and your regular doctor. Good luck on your journey, and come back if you have questions. There are lots of different views on this forum.


Hollie733 - January 3

Oh my goodness so much to do and try and all i want is something that is instant i guess like a lot of other people, i will not let this illness beat me but i am down in the dumps with it at the moment as i have laryngitis and the pain of fibro is pretty bad i do not have the time or energy at present to sit and work out where to start, thank you for your information i will keep coming back to it and take your advice much appreciated kind regards Hollie


January - January 3

Hi Hollie -- yes, it is a lot to do, and really is overwhelming if you are feeling badly. I hope you have some support system in your life to help you out right now if you are ill - on top of the fibro! We don't all have family support - but hopefully there is someone in your life, a significant other or a friend or someone, who might be willing to learn about fibro with you and help you fight to get some decent care. Meanwhile, just rest and take good care of yourself until this flare-up passes. Wishing you the best.


Hollie733 - January 3

I have a brilliant family, sometimes thats the only way i get my flare up's because they all rally around and help me my mum is exceptional and a very special lady who is always there for me in my times of need. My partner i think is just beginning to understand it a little but i don't even understand it so can't expect him to. I just need to talk it one step at a time thank you January x


January - January 8

Hi Hollie -- if you look at the right, this site has several support forums, one for family members. It hasn't been used a lot lately - but I'm sure there is a lot of old information in there. I'm very glad to hear you have people around you who are understanding and trying to help you. Many of us don't have that, so count yourself lucky at least in that regard!

The syndrome we all suffer from is complicated, and different in each person -- so you have to learn how it affects you; experiment a bit to find out what helps you feel better. You will probably understand this syndrome better than your doctor, once you get educated about it. Get a notebook, and take notes on yourself! Google is a wonderful tool! You can put anything in there and get lots of articles. Gather up research on the symptoms that bother YOU, and read up on various treatments. Some will be things you can try on your own, like massage, heating pads, acupuncture, gentle exercise, or supplements. (I would only take the drugs as a last resort.)

Make sure you take a good vitamin and mineral supplement each day, (as long as you don't have some reason not to). Get good sleep and de-stress your life. There is a lot of research about other supplements you can try - Life Extension and the Vitamin Shoppe have good websites with great information - but unless you understand medicine, use supplements with the help of a medical professional of some kind and get your blood tested as needed. If your doctor won't work with you, find a pharmacist or a nutritionist or alternative practitioner to advise you.

You really can feel much better, but it takes some effort. Good luck with it. Come back and ask questions if you need to - and tell us how you are doing!


FibroGal - January 8

Hi, Hollie. I have had FM for about 10 years now and have only recently been doing physical therapy (exercises) for it. I feel that they help. I can relate to the fatigue which seems never ending. I am in a vicious cycle of insomnia and sleeping late. Also I have extremely bad anxiety and depression. I find fibro and anxiety symptoms so baffling and confusing the physical manifestations of them just make me worry about my health all the more. Have you expressed your concerns to your fiancé? He needs to understand you will need his physical and emotional support raising children and managing the household. Any possibility you can stop working outside the home at that time and devote yourself completely to being wife and mother? That is not only demanding enough, I believe you will find it rewarding. It's what I did and I don't regret it. I also hope you can find a doctor who takes your physical complaints seriously. You need someone who listens, but does not simply throw pills at you. My best to you and will keep you in my thoughts and prayers. [3


kvc33 - January 8

I would give up the swimming for a while and see if that makes a difference. Pools (in Canada anyway) usually have chlorine in them which is a nasty substance that some people are very sensitive too. You already know that your skin is getting wrecked. Whatever you are swimming in goes into your body through your skin. Try short walks and warm baths instead to keep yourself limber.


January - January 13

Hollie - I agree with kvc about the swimming, but maybe for different reasons. We are all different… but for me, my immune system was really low (before I went gluten free) so I had the "flu" a lot. I loved to swim, but was regularly sick when I did so. I think I was picking up germs in the water. I finally came down with Epstein Barr virus, and I am convinced I got it from the pool at the health spa I used. Someone later told me that the water in their pool had been tested by the health department (other people had gotten ill there) and the water was filthy. Chlorine kills a lot of germs, but maybe not everything. Nobody really knows what causes fibromyalgia, and some cases may be triggered by infectious agents. And, as kvc said, some of us may be more sensitive than average to chemicals like this.

I probably had fibro in a mild form before I got the Epstein Barr, but that started a long downward spiral. It took a lot to pull out of it, I made a lot of changes in diet, take many supplements, rest a lot, etc. I do NOT swim any more, and I have not been really sick like before since making all the changes.



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