Hi Fibro Friends! I recently got diagnosed with fibromyalgia. However I’m struggling with there not being a definitive test that comes back as positive. My fear is that something else has been missed even though excessive tests have been done. I have chronic hives (urticaria) that continues to come back and specialists have no answers as to why it is happening - they just say my immune system is not happy it’s not external factors.. I’ve been put on an anti inflammatory eating plan which is so restrictive. It’s been almost 4 weeks and I’ve seen no benefits. It includes drinking celery juice on an empty stomach every morning, not eating gluten, corn, starch, sugar, caffeine and alcohol. I want to believe this will show benefits soon as it is really hard to give up all these things at once. I am unfortunately still getting home from work and napping for at least 3 hours every afternoon .. I feel guilty I’m wasting my life in bed but there’s nothing I can do about it. Has anyone got any tips or similar experience?
Feeling lost
- Thread starter Sunseeker
- Start date
BlueBells
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Hi @Sunseeker
Welcome to the forums
It won't be long before a few others drop by. This is a supportive community, and you are welcome to browse around and pop in comments where ever you feel inclined.
Welcome to the forums
This plagues me so often !! Not actually in bed, but it seems my head drifts off in it's own little fibro fog and at the end of the day I struggle to have accomplished anything. Not every day, but I'm having a fair spin of them the last few weeks.
It won't be long before a few others drop by. This is a supportive community, and you are welcome to browse around and pop in comments where ever you feel inclined.
JamieMarc
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@Sunseeker
Hello and welcome.
I believe that I can speak for everyone here that your frustration is shared among all of us.
I am now in year 3 of my own diagnosis, and I still feel frustrated that perhaps my doctors and I have not done enough testing to at least cure some of my symptoms. In fact, 3 months ago I told my doctor that I wanted to have her order a battery of x-rays, take a close look at them and see what, if anything, we could fix. Unfortunately, I have not yet been able to afford the Radiology she ordered until I get some of my other medical debt paid down.
In your case, having just received a diagnosis, you are still in the early stages of treatment and I would urge you to hang in there, but be assertive in getting answers. Be patient though.
It has never been recommended to me to change my diet, although I have experimented on my own. I am currently on a low-carb diet, and I find that makes me feel the best. I don't think it's a bad idea, but it seems to me that after 4 months your doctors should have the answers whether they be inconclusive or conclusive.
I don't believe hives is considered a symptom of fibro and you do not mention what other problems you are having other than fatigue, which certainly can be a symptom of fibro.
Don't feel guilty. That's not going to help anything. That will only increase your stress and you definitely do not want that.
I sometimes wake up too early and cannot get back to sleep due to pain. Those are the only days that I nap, and when I do I limit my naps to 30 to 40 minutes. Anything longer than that is going to affect my nighttime sleep. Best to maintain a regular sleep schedule. I would recommend to you activity as opposed to a 3-hour nap, but it sounds like you're so fatigued that you do not have the energy to even force yourself to engage in some form of activity that you enjoy.
Sorry not much help other than offering my support. With the symptoms that you mention, I would recommend seeing a pulmonologist for a sleep study, a neurologist and patch testing which may identify the cause of the hives. Hives are most often treated with antihistamines. Often, unfortunately, the cause is never identified. Usually, it is an allergic reaction to food, medication, physical agents or environment. But it could also be autoimmune.
Wishing you the best of luck and my support.
Hello and welcome.
I believe that I can speak for everyone here that your frustration is shared among all of us.
I am now in year 3 of my own diagnosis, and I still feel frustrated that perhaps my doctors and I have not done enough testing to at least cure some of my symptoms. In fact, 3 months ago I told my doctor that I wanted to have her order a battery of x-rays, take a close look at them and see what, if anything, we could fix. Unfortunately, I have not yet been able to afford the Radiology she ordered until I get some of my other medical debt paid down.
In your case, having just received a diagnosis, you are still in the early stages of treatment and I would urge you to hang in there, but be assertive in getting answers. Be patient though.
It has never been recommended to me to change my diet, although I have experimented on my own. I am currently on a low-carb diet, and I find that makes me feel the best. I don't think it's a bad idea, but it seems to me that after 4 months your doctors should have the answers whether they be inconclusive or conclusive.
I don't believe hives is considered a symptom of fibro and you do not mention what other problems you are having other than fatigue, which certainly can be a symptom of fibro.
Don't feel guilty. That's not going to help anything. That will only increase your stress and you definitely do not want that.
I sometimes wake up too early and cannot get back to sleep due to pain. Those are the only days that I nap, and when I do I limit my naps to 30 to 40 minutes. Anything longer than that is going to affect my nighttime sleep. Best to maintain a regular sleep schedule. I would recommend to you activity as opposed to a 3-hour nap, but it sounds like you're so fatigued that you do not have the energy to even force yourself to engage in some form of activity that you enjoy.
Sorry not much help other than offering my support. With the symptoms that you mention, I would recommend seeing a pulmonologist for a sleep study, a neurologist and patch testing which may identify the cause of the hives. Hives are most often treated with antihistamines. Often, unfortunately, the cause is never identified. Usually, it is an allergic reaction to food, medication, physical agents or environment. But it could also be autoimmune.
Wishing you the best of luck and my support.
Yep @Sunseeker I nap only if I need it - like @JamieMarc (hiya!
) I never go to bed, I limit myself to 30 mins. Night sleep is disrupted enough without making things worse. I have a night routine, no tv\phone\ipad for a couple of hours before, gentle stretches to loosen up, no caffeine ever, ( that's a tough one for me).
Try not to feel guilty, easier said than done. It's not as if any of us actively choose to have fibromyalgia. We can only find small changes that we can implement as individuals.
My diet is a bit restrictive due to IBS and hiatus hernia so I mind of know what I can get away with in small quantities and those that I simply can't touch. But trial and error.
Oops forgot - welcome!
) I never go to bed, I limit myself to 30 mins. Night sleep is disrupted enough without making things worse. I have a night routine, no tv\phone\ipad for a couple of hours before, gentle stretches to loosen up, no caffeine ever, ( that's a tough one for me).Try not to feel guilty, easier said than done. It's not as if any of us actively choose to have fibromyalgia. We can only find small changes that we can implement as individuals.
My diet is a bit restrictive due to IBS and hiatus hernia so I mind of know what I can get away with in small quantities and those that I simply can't touch. But trial and error.
Oops forgot - welcome!
@JamieMarc thank you for the response! I think I should have been more clear, I’m on an anti-inflammatory diet to help manage fibro symptoms (pain and fatigue) and then the dr also said it may be helpful in stopping hives as it is autoimmune and not anything I am eating or environment related (plenty of tests done). I’ve done all the tests. Not sure how restrictive I should be on an anti-inflammatory diet. I’m aware there’s certain foods that may trigger symptoms / are not recommended and I have IBS so already don’t eat certain foods. Would you say it’s okay to follow the food regimen as best I can but occasionally enjoy an alcoholic beverage (preferably aperol or pims now that the weather is finally nice in London !). Or would this not be a good idea?
With the naps you are so right! I can’t nap for only 30 minutes I’ll keep snoozing my alarm. So I think I need to walk or keep outside my bedroom during the day it’s too tempting. I think the more I am able to exercise the less tired I should feel? It’s just hard to break this napping habit. Wishing you a wonderful weekend and thanks again for your response!
With the naps you are so right! I can’t nap for only 30 minutes I’ll keep snoozing my alarm. So I think I need to walk or keep outside my bedroom during the day it’s too tempting. I think the more I am able to exercise the less tired I should feel? It’s just hard to break this napping habit. Wishing you a wonderful weekend and thanks again for your response!
Hi @SBee ! I also have IBS! Seems to be common with people who have fibromyalgia? So I was already on some sort of eating plan but now this anti-inflammatory one seems more restrictive and like I can’t even enjoy meals and the things I love .. is it even sustainable to completely cut out foods when I have not noticed any difference in the last month I’ve been doing it for? Or is it all about enjoying in small quantities (referring mostly to chocolate)
Thanks for your response!
Thanks for your response!
Hi @Sunseeker
That does seem a tough restrictive elimination diet they have put you on. Obviously I am not qualified to comment on detail, but I think a month may not be long enough? Can you get back to the Dr who implemented this and ask further as to how long they suggest to find a difference?
maybe in time they will suggest adding foods back into diet in a small way? do ask them, they will have good reasons for suggesting this to you. Working with fibromyalgia takes patience which is not always easy.
IBS does seem to go hand in hand with fibromyalgia, as well as other conditions. There seems too be a few crossover symptoms that are common in other health issues. My own way of finding out what I can eat ( or not ) was trial and error over some 25 years or so. Throw in a more recent hiatus hernia and even more foods and drinks removed from my diet.
I do eat a pretty well balanced mostly plant based diet and don't actually miss many eliminated foods? Haven't touched alcohol for years, or caffeine ( yeah, OK, I do really really miss this
) as they overestimate my system - a knock on from the chronic fatigue. It's tough when we go out somewhere to eat, I sound a fussy cow! but I want to give my body less stress and eating the acceptable foods to me is part of that!
weekends looking good for most of UK, so enjoy the sunny weather before they hit us with the usual drought warnings....
That does seem a tough restrictive elimination diet they have put you on. Obviously I am not qualified to comment on detail, but I think a month may not be long enough? Can you get back to the Dr who implemented this and ask further as to how long they suggest to find a difference?
maybe in time they will suggest adding foods back into diet in a small way? do ask them, they will have good reasons for suggesting this to you. Working with fibromyalgia takes patience which is not always easy.
IBS does seem to go hand in hand with fibromyalgia, as well as other conditions. There seems too be a few crossover symptoms that are common in other health issues. My own way of finding out what I can eat ( or not ) was trial and error over some 25 years or so. Throw in a more recent hiatus hernia and even more foods and drinks removed from my diet.
I do eat a pretty well balanced mostly plant based diet and don't actually miss many eliminated foods? Haven't touched alcohol for years, or caffeine ( yeah, OK, I do really really miss this
) as they overestimate my system - a knock on from the chronic fatigue. It's tough when we go out somewhere to eat, I sound a fussy cow! but I want to give my body less stress and eating the acceptable foods to me is part of that!weekends looking good for most of UK, so enjoy the sunny weather before they hit us with the usual drought warnings....
JamieMarc
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@Sunseeker
I understand now. I should look into this diet myself as I have another condition that keeps me in a persistent state of inflammation for over 30 years now. I guess I was not even aware there was such a diet, or had forgotten about it.
If it were me, I would say yes
! Life is short, and I believe that we should not sacrifice the things that bring us joy. My own diet is liberal low-carb. I allow myself a weekend pizza night, and occasionally a high carb treat when dining with friends. BUT, I don't want to get myself in trouble by playing your doctor. LOL 
This is the way it is with me. I am energized by activity, plus it is SO important to keep the joints, muscles and bones healthy as I age. Nothing like a long bike ride and a hike for me to make me feel good and happy.
Remember, activity releases feel good neurotransmitters! I hope you are able to accomplish this @Sunseeker
Here for you!
Hugs
Olesia
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Hello. There is such a disease as Urticarial vasculitis. This is an autoimmune disease and you need to donate blood for specific antibodies. Rash and acute inflammation of the skin do not appear just like that (for no reason). Perhaps you need to get checked or read about this disease. Maybe this makes sense and is useful.
BlueBells
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@SBee @Sunseeker I seem to get symptoms of IBS, but doc says I haven't got it. I'm not sure if any foods affect it, I've tried to work it out, and it seems random.
I've always had a bit of chocolate intolerance, I love it, but too much, makes me feel very unwell. too much can be as little as one square of a block of chocolate, and I cannot go near dark at all!!! Fats and sugars I need to balance, more of one, then more of the other . Just the way I've always been.
I think @BlueBells it's just being in tune with your own body?
Some days I can tolerate a little of some foods, other days not. And when so eat something on a day I shouldnt? My body says nooe, shouldn't have done that.
The more We understand about ourselves and our reactions to foods, stress, happy things, then the more we can help be the best we can. It's like an ongoing maintenance thing, frustrating at times but also with a lot more kindness.
no one knows our bodies better than ourselves. Ever changing just to keep us on our toes!
Some days I can tolerate a little of some foods, other days not. And when so eat something on a day I shouldnt? My body says nooe, shouldn't have done that.
The more We understand about ourselves and our reactions to foods, stress, happy things, then the more we can help be the best we can. It's like an ongoing maintenance thing, frustrating at times but also with a lot more kindness.
no one knows our bodies better than ourselves. Ever changing just to keep us on our toes!@BlueBells I went to a dietician who was really helpful in guiding me through an elimination diet. My main triggers are onion, garlic, gluten and some cheeses!
Olesia
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I'm very sorry to hear that the problem has not been diagnosed. A biopsy is an accurate (good) test, I didn’t know that you had it done. If there was vasculitis, this would be confirmed by histology.
Then all that remains is allergic reactions, as you say...
Then all that remains is allergic reactions, as you say...
Rainbow
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I tried soothing my IBS for years by 'eliminating this, adding that' taking meds etc etc & you know what, nothing made any difference.
It just pleases itself when to appear &/or disappear & often for no logical reason I can identify.
So I gave up trying & eat what I like when I like & am much happier for doing that and that attitude seems to make it easier to bear,
ie 'Well, that'll be the Creme Caramel' (or whatever) but it was worth it
Having said that, stress &/or anxiety or small things such as medical appointments & even the pressure of a deadline to meet
can & often does trigger it for sure, so being aware of that I try & stay within Dash Distance of a loo at all times just in case
but that's easier said than done a lot of the time.
I have a friend, same age as me who has IBS too but he often doesn't make it in time, so I guess I'm lucky
- but maybe am pushing my luck by saying that
Hey Ho, what's life without a challenge
but it's when they come by the dozen it gets beyond challenging & Fibro is multi-faceted symptom-wise!
It just pleases itself when to appear &/or disappear & often for no logical reason I can identify.
So I gave up trying & eat what I like when I like & am much happier for doing that and that attitude seems to make it easier to bear,
ie 'Well, that'll be the Creme Caramel' (or whatever) but it was worth it
Having said that, stress &/or anxiety or small things such as medical appointments & even the pressure of a deadline to meet
can & often does trigger it for sure, so being aware of that I try & stay within Dash Distance of a loo at all times just in case
but that's easier said than done a lot of the time.
I have a friend, same age as me who has IBS too but he often doesn't make it in time, so I guess I'm lucky
- but maybe am pushing my luck by saying that
Hey Ho, what's life without a challenge
but it's when they come by the dozen it gets beyond challenging & Fibro is multi-faceted symptom-wise!
