Trying to push through

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megcam

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Hey everyone, I'm new to this forum but have spent hours reading through your posts! Sorry this will probably be long!
I'm just posting this for basically support/advice as I feel like I'm past the point of giving up.
I've always suffered from severe brain fog, (sometimes cant speak, concentrate and take nothing in) and have chronic fatigue but never able to sleep at night. I just saw this as normal and just thought I was a pretty 'useless' person haha.
I first went to the doctors 7 years ago with sharp stabbing in my chest and I'd get a stabbing pain in it with the slightest touch and when breathing, they told me it was off an injury (but I suffered no injury) I put up with the pain but then I went back about 2 and a half years ago when it got unbearable. They gave me a blood test and I got a call saying I tested high for a blood clot on my lungs, I spent over 8 hours being tested and examined and they told me I didn't have one after all, then sent me on my way without any answers on why I was suffering the pain I was in.
Since then to this day, I have had countless amount of blood tests, about 20 last year alone. Doctors would refuse to see me as my Vitamin D was low so they were saying that the reason I'm in pain is because of that. They prescribed me high strength vitamin D tablets and I spoke to a pharmacist and he said that he doesn't know why the doctors even prescribed me with these as my vitamin D wasn't that low and nothing to worry about. I finally spoke on the phone to a doctor just before Christmas and he said he would refer me to a specialist but wanted ANOTHER blood test first and then he'd examine me then refer me to a fatigue specialist.
I finally saw light at the end of the tunnel, fast forward to my appointment (Monday just gone) he was the rudest man ever, snapping at me because I wasn't 'relaxing' enough when he was examining my movement, ignoring all my symptoms I was telling him, at one point he basically called me a liar because I was talking about how I'm exhausted nearly all the time yet can't sleep, I said when I do eventually get a 'decent' night sleep I feel worse for it and like I haven't slept at all. He said 'well which is it because if you can't sleep then how could you possibly sleep for the recommended hours' he then prescribed me (can't remember name as I haven't picked them up yet sorry - also have the worst memory haha) tablets to help me sleep, they'll apparently make me super drowsy where you can't drive and you can't get pregnant on them, he did ask me if I had children or was trying, I told him I'm getting married in 6 months and we will probably try after then (I'll be 29 after I'm married so I don't exactly have years left to try and start a family) and he said 'well on these you can't try'.
I got out of my appointment and cried my eyes out driving home, still NO answers what's wrong with me. I feel every time they'll focus on just one symptom, like I said I get a lot of heartburn when listing off all my symptoms, straight away tablets, chest pain? Here have some sertraline for your anxiety (which absolutely destroyed me I had to come off)
I never even heard of Fibro before until my Dad said he was diagnosed, and we are so similar and I have all the exact symptoms as him, the doctors know he has it too as I've said but they don't seem to care.
I've given up a few times as I feel I'm wasting my time but the start of this year I've felt worse than ever, on the 2nd I could barely walk, had to keep taking breaks just walking around my house, my depression hit an all time high and I honestly didn't want to live anymore, all because I felt so ill. I couldn't do anything just feeling in pain and empty. I keep getting new symptoms as of recently too, sometimes I'm walking and the first time it happened I thought I stepped on glass as the pins and needles in my feet were so sharp and painful. I've had a pain/twitch in my eye followed by blurriness for probably 7 weeks now!
I just don't know what to do anymore they are making me feel it's all in my head and I'm starting to believe it. I've been told by people to change doctors as they are pretty useless as a practice. But I feel that will send me backwards and the thought of more blood tests honestly destroys me, my veins are no more at this point haha.
If you've read this far thank you so much, feel like I have no one to talk to and who understands apart from my Dad (it took him 25 years to even get diagnosed) but it's hard to get answers with what's wrong when your doctors won't take you seriously. I don't want to self diagnose myself but at this point might have to, I don't know if I should push through to get diagnosed or leave it as all the stress from doctors make me worse.
 
Hi, and welcome, megcam. I am sorry you are feeling so poorly and feel like you are getting no where.

I've been told by people to change doctors as they are pretty useless as a practice. But I feel that will send me backwards and the thought of more blood tests honestly destroys me, my veins are no more at this point haha.
Hate to say it, but I completely agree that you need to find a better doctor. Get a recommendation from family or friends on a better practice to go to.
There is zero reason for a doctor to treat you rudely, or not listen to you - any doc that does that should not be practicing, in my opinion.
But, before you go, make sure you get copies of your medical records from you current practice to take with you to a new one.

I know it seems like a daunting task, finding a new doctor, going through more testing, but you can do it, and it is important to rule out other diseases/conditions. The problem lies with the symptoms of fibro overlapping with so many other things, so making sure none of those other things are actually the cause of your fatigue, pain, and other symptoms is very important. And even if you do have something else, that does not mean you dont also have fibro, as it can coexist with many other conditions - either way, it is important to know for sure what is going on.

In the meantime, there are things you can try - without the need of a doctor - to help you try to manage your day to day living. I highly recommend you read through the pinned post at the top of the main general discussions forum page - Sunkacola's "advice for managing fibro" post... there are a lot of different things you can try in that post. (link below). Sadly, there are no "quick fixes" but given a little time, things can be better.

I am also going to suggest that it is important for you to know what is being tested for, and what the results of those tests are, so you can make better informed decisions about your health. Doctors are not perfect (as much as they like to think they are) so we, as patients, need to be actively involved in our healthcare.

I do hope you stay around here - we will do all we can to be supportive and help you on your journey.

 
Hi megcam,

I'm also sorry to hear your plight! Adding to cookiebaker's great ideas,
I think if you can get hold of all your test results you might not need those repeated.
I don't believe a new practice can send you backwards, you already have your experience, you know what you're looking for and what you aren't, and now you have "us", you are reaching out for resources, that's always an improvement.
Some people in the UK believe it's not possible to change doctors on the NHS, but it is I know.

Finding a good practice would seem to be your first target, best experienced with fibromyalgia.
Do you have or do you need ideas how to do so?
What about your dad's doc, is that a different one?

As said: As long as you don't feel sure about consulting anyone new,
approaching the whole thing as fibromyalgia and following the ideas given above can greatly help, whatever it is you have, because they do without meds, are good for all chronic pain diseases.
This will give you success and empower you to then make sure you get other things excluded soon, which however has probably already happened to a certain extent, if you have had that many bloods taken, just that no one's then simply concluded that it must be fibromyalgia. 20 blood tests do not sound as if you're not being taken seriously, just that they don't understand fibromyalgia.

Have you seen the 2022 UK guidelines which are similar to the quick easy online test on our main site here?
 
Welcome to the forum.
I agree with what is said above by Jay and Cookiebaker. And I want you to know you are not alone. Many people here are knowledgeable and very helpful, and we are here to support you as you work with this. This can all be managed and you can have a life, I promise you. Not the life you would have without fibromyalgia, but a life worth living. We will help you to find that.
 
Hi there, i am interested in the celecoxib aspect, the reason being celecoxib is part of my medication, the reason i ask is for me personally(and my understanding, im not a doc but have taken this particular medication for over five years. Were you advised to take this as and when necessary for pain? Essentially the same application at ibuprofem or nurofen?

My experience with the above medication is this:
I take this medication twice a day AM and PM, and have done for atleast five years, i have experienced no side effects from this medication and have come off it twice. Both times i stuck it out powered through the problem being my other pain meds usage went up. The reason i came off is that ot is clinically accepted that after 6 months of use this medication will no longer be effective, this has not been my experience and in fact the opposite, removing this medication from the mix definitely did not help and made symptoms worse, back on it and it helps even being on it for quite some time, far longer than some clinicians say who state it must no longer be working. This medication (in my experience) is not earth shattering in the treatment of pain specifically but for me in conjunction with other things it does help, but in my experience its a take regularly and a specific amount each day. This is an anti inflammatory that does not have the negative long terms effects on your organs that ibuprofen does.
I dont know what your advice from the doctor on that medication was but perhaps some clarity on how it should be used may be helpful(or it may not) a common theme around here and for fibro in general is that just because it works for one does not guarantee it will work for you.

Find what works for you, and from the sounds of it youve already found things that do which is a battle in itself at times.
 
i am interested in the celecoxib aspect, the reason being celecoxib is part of my medication, the reason i ask is for me personally(and my understanding, im not a doc but have taken this particular medication for over five years. Were you advised to take this as and when necessary for pain? Essentially the same application at ibuprofem or nurofen?
Funny, I also don't hear of celecoxib or other COX-2-inhibitors often on the forums.
My docs didn't seem to know about the 3 FDA-approved fibro meds, and my first pain med was celecoxib.
I took it twice and turned red almost all over, big red patches on torso and rashes on my legs.
I was advised to take it every day. Prescribed by an orthopedist who had not the least inkling of fibro, she was thinking it was some hormone issue, wanted me to try progesterone and praps testosterone and was disappointed when my bloods turned out normal.
(Similar with another COX-2-I. she deemed worth trying, similar with metamizole generally prescribed commonly here, the only one prescribed by the rheum after diagnosing me a month after the orthopedist's try....)
 
Funny, I also don't hear of celecoxib or other COX-2-inhibitors often on the forums.
My docs didn't seem to know about the 3 FDA-approved fibro meds, and my first pain med was celecoxib.
I took it twice and turned red almost all over, big red patches on torso and rashes on my legs.
I was advised to take it every day. Prescribed by an orthopedist who had not the least inkling of fibro, she was thinking it was some hormone issue, wanted me to try progesterone and praps testosterone and was disappointed when my bloods turned out normal.
(Similar with another COX-2-I. she deemed worth trying, similar with metamizole generally prescribed commonly here, the only one prescribed by the rheum after diagnosing me a month after the orthopedist's try....)
I think the biggest take away here is so pertinent and important to keep in mind, Fibro is so little understood but one really clear aspect is that just because abc works for Subject 1 does not mean is will work for subject 2-10 or vice versa,


Out of curiosity what are the 3 fda approved fibro meds? Im NZ based so always curious about other countries approaches
 
what are the 3 fda approved fibro meds?
Since 2007: pregabalin/Lyrica, since 2008: duloxetine/Cymbalta; since 2009: milnacipran/Savella.
gabapentin/Neurontin isn't amongst them, because pregabalin is a development of it, and they never got round to testing whether it is also good for fibromyalgia pain, so it's prescribed by way of generally "pain".
And amitriptyline/Elavil is now deemed just as good or praps better than the first two by recent comparing studies, whilst the 3rd doesn't seem to cut it for anyone.
But like you already said at the beginning: research is well aware of the fact that no meds generally work for us, not any of these either. Whilst they confirm that nothing works for all of even for most of us, they do keep pointing at things that have been found more effective than meds, like certain kinds of physical and mental therapy.
 
Since 2007: pregabalin/Lyrica, since 2008: duloxetine/Cymbalta; since 2009: milnacipran/Savella.
gabapentin/Neurontin isn't amongst them, because pregabalin is a development of it, and they never got round to testing whether it is also good for fibromyalgia pain, so it's prescribed by way of generally "pain".
And amitriptyline/Elavil is deemed as one of the best by recent comparing studies.
Thank you 😊 well i can tick all but the milnacipran of the horrifyingly long list of things ive tried(medication, alternative therapies(osteopath, accupuncture, massage(both gently and deep tissue after the research on myofascial release in fm patients potentially being helpful)), as well as chiropractor and psychologists as well).

For me it is one of the most frustrating parts of fm is that theres no 'this will definitely help' and if it does help it might not do so long term.
Best analogy ive got(that the imagery kind of makes me giggle) is like a game of whack-a-mole.
 
That about sums it up right there! :D
I personally love this analogy because for me it has an amusing back story as well

I have two dogs a chocolate labrador, her name is Duchess and a blue heeler x german shorthaired pointer, his name is Patch. Patch is a highly intelligent and energy filled dog with an enormous pray drive, i took both dogs swimming on a dam that had a couple of ducks with like 5 or 6 ducklings(spotted after they were already in the water, and unfortunately once my two are in the water unless your wading in after them and physically dragging them out of the water youve just gotta wait it out till theyre done, they are both water rats through and through) anyway Patch straight away made a bee-line for one of the ducklings only to have it duck dive and disappear so hed look around find another duckling and go after that only to have it disappear on him again, you get the idea.

No ducks were caught or harmed at all the funny bit was patch's confusion at the vanishing ducklings.

The labrador on the other hand couldnt have been less interested in the ducks if she tried, her motto in life is 'everyone wants to be my friend and we can share anything'(this dog will stand back and watch another dog eat her food)
 
I personally love this analogy because for me it has an amusing back story as well

I have two dogs a chocolate labrador, her name is Duchess and a blue heeler x german shorthaired pointer, his name is Patch. Patch is a highly intelligent and energy filled dog with an enormous pray drive, i took both dogs swimming on a dam that had a couple of ducks with like 5 or 6 ducklings(spotted after they were already in the water, and unfortunately once my two are in the water unless your wading in after them and physically dragging them out of the water youve just gotta wait it out till theyre done, they are both water rats through and through) anyway Patch straight away made a bee-line for one of the ducklings only to have it duck dive and disappear so hed look around find another duckling and go after that only to have it disappear on him again, you get the idea.

No ducks were caught or harmed at all the funny bit was patch's confusion at the vanishing ducklings.

The labrador on the other hand couldnt have been less interested in the ducks if she tried, her motto in life is 'everyone wants to be my friend and we can share anything'(this dog will stand back and watch another dog eat her food)

What a great story! I can easily envision the whole thing happening! LOL

I wish we could have a 2nd dog again, but our current fur-baby has to be an only child - she does not play well with others and at this point, she is too old to even try anymore..
funny thing is, she really wants to play with the cat, but the cat is having absolutely none of it, LOL
 
What a great story! I can easily envision the whole thing happening! LOL

I wish we could have a 2nd dog again, but our current fur-baby has to be an only child - she does not play well with others and at this point, she is too old to even try anymore..
funny thing is, she really wants to play with the cat, but the cat is having absolutely none of it, LOL
It was highly entertaining!! I do love having the two, i do feel a bit sorry for the Lab at times though as Patch is ALOT of dog with an infinite supply of energy(anybody else jealous, i sure as hell am, imagine than an infinite supply of energy 🙌) and wants to always be playing(or if Duchess doesnt want to just hanging off her neck or chomping on the extra skin there🤦‍♀️)
 
For me it is one of the most frustrating parts of fm is that theres no 'this will definitely help' and if it does help it might not do so long term.
Best analogy ive got(that the imagery kind of makes me giggle) is like a game of whack-a-mole.
Can't say anything frustrates me much, as I manoeuvre it like a game of rummy... But I guess I'm a rare one.
The toughest part for me is doing 100++ treatments 24/7/365, but still only getting <20% energy.
But if I didn't do them, I'd have 4x the symptoms, I'd be totally incapacitated, so worth it.

Sometimes I'd like to be thru with the research & trialling of new treatment ideas to be able to do more other things, but I also enjoy the hope given by new treatment possibilities (mainly supps) cropping up regularly soon, even when I've occasionally believed there's nothing more.
A godsend after 3 years of being up 6-8x per night, 1-2(-3)h, often not restored, now the sleep breaks staying down at 3-5 per night, 30' in total, and being well awake in the mornings. So the night is no longer wearing, my days much longer, getting much more done. (After keeping up my antihistamine in the evenings to tolerate the 3rd CoV-jab better.)

Whack-a-mole is what I play when treating my local pains, for me a funny, but also a positive image, because I've gotten good at the game and am down to 2 or 3 moles a week. At the moment still my finger tips/dry skin from the cold.
I see keeping up the 100++ treatments as keeping 100 plates spinning - a bit of a strain remembering them all, but an impressive feat, so understandable that there's always one or two falling down, which I then put at the top of my blog with an 🚑 to try to focus on getting them back under control - like taking bed & supps earlier, or my newest one: taking any foods I want to eat out of the fridge 2h before eating.
 
😳 that don't sound good jaycs (coming out in rashes) was it some kind of allergy?
 
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