Newly diagnosed and feeling lost

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Kerryb

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Hello,

I am newly diagnosed by my GP. I have had months and months of chronic pain and several blood tests. My GP has concluded that my symptoms match that of Fibromyalgia. I have spoken to her on many occasions, however, she has never met me or examined me in person despite my requests. The frustration begins as she has advised me anti depressants and painkillers have a minimal chance of success and has basically told me that it is down to me to manage my life in order to cope with all the symptoms. She does not want to refer me because in her words - I have no reason to and they won't help me.

So, I'm stuck feeling very depressed and anxious about it all. I literally feel completely alone and lost and don't know where to turn. My current GP is new to me as of last year as I swapped practices, hoping for better help. Any advise or suggestions would be great. I just wanted to post somewhere where people would understand. Thanks for reading xx
 

sunkacola

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Oh, Kerryb, I am so sorry to hear that you feel so bad and so alone. But you are not alone in this. We are all here to help and to support you and to answer questions and advise you, cheer you on and celebrate your gains and be there for you when you are down. You are welcome here and we will do whatever we can to help.

It is true that antidepressants do not address pain and pain medication is helpful or not depending on many things.

Antidepressants will help you not to be so depressed....if you get the right one and it works for you. They can also help you to manage stress in your life better and that can in turn help with the fibro symptoms. But finding the right one can sometimes be a real roller-coaster ride.

Pain medication is another thing. Some of it helps some people, not all of them help everyone. And you need to be careful not to depend on pain medication to make things better for you, and not to get addicted to the medications that can cause that. So pain meds are really a mixed bag. Ultimately relying on medications to manage this is unwise.

Your GP is steering you toward taking charge of managing this yourself, and personally I think that is basically a good thing. Most of us here will agree that doctors are only helpful to some degree. Ultimately it is up to you to manage your own fibromyalgia. But please do not let that scare you or get you down because we are here to help with that as well.

Here is where you start:

In this post there are a lot of suggestions for things that you can try and every single one of them has been tried and proven to help at least some people. Not everything may seem possible right now but you just need to start somewhere. You don't have to do it all at once, and as the post says you need to be your own experimenter because no one can tell you what will work for sure for you.

Now, as for your diagnosis. Your GP is saying that she thinks you have FM, but you don't really have a proper diagnosis because that is achieved by first testing for all of the possible things that could be causing the symptoms. Those things are many and include MS, ME, Lupus, Rheumatoid Arthritis, and some others. Without eliminating all of those, you cannot possibly know for certain that what you have is fibromyalgia. The blood tests you mention -- did they screen for all of these things?

If you are having fibromyalgia-like symptoms, then the advice in that post will help you whether it is caused by FM or not. But really, you need to get a definitive diagnosis. Some of those things are not determined by a blood test. Maybe you do have FM, maybe not, and it would be very helpful for you to know for sure.

Therefore I suggest that you see if you can get in with a different GP, one who understands that all of these tests to eliminate other diseases and syndromes need to be run before saying that you have FM.

Your anxiety is going to increase all of your negative symptoms, so do your very best to be calm and not to worry. (advice on that is in the post as well).

If you read that post and have questions, feel free to ask.
If you want to list your symptoms here, we can respond specifically to that.

And remember you are not alone.
:)
 

Kerryb

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Thank you so much for your kind and informative reply to my post.

In answer to some of the points you made. My gp has run every blood test possible, checking for immune type issues such as lupus, and some of the bigger nasties such as RA. My inflammation markers have also been checked on a couple of occasions and have appeared normal therefore RA and others has been excluded. Her conclusion therefore is that in light of no other evidence for my symptoms, Fibromyalgia is the only explanation. I would like to see a specialist who can confirm or deny my doctors diagnosis.
 

Jemima

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Hi Kerryb,

Welcome here - I'm so glad you found us! As Sunkacola said, you're definitely not alone. There's a wonderful bunch of people here who can give advice and answer any questions you have. There's also tons of useful information and ideas, and you can use the search function to see if things you want to understand have been discussed in the forum before.

Sunkacola is right that what doctors can do for people with fibromyalgia is quite limited. I completely understand you wanting to find someone who can confirm your diagnosis and give you a bit more support or a referral or two, but for sure, much of getting a handle on this condition is learning how to manage it ourselves - figuring that out can make a massive difference!

The antidepressants that they use to treat fibromyalgia are SNRIs, which means that they impact the neurotransmitters Serotonin and Norepinephrine. Alongside being associated with depression, these neurotransmitters also play a role in modulating pain perception, which is why they use these kinds of drugs for fibromyalgia. That said, they certainly don't work for everyone, and many find that they bring a lot of unwelcome side effects. I tried the medication route initially, but found that everything I was prescribed made me incredibly sick with symptoms like heart palpitations, nausea, dizziness, hot flashes, tremors, and even losing the ability to orgasm (a bit TMI :oops: I know, but it's better to be informed!) Coming off duloxetine (Cymbalta in the US) brought really nasty withdrawal symptoms for me, too. Now, that's not to say you shouldn't try these drugs - for some people, they seem to be great - but it's really worth approaching them with an awareness of the risks, and potentially considering them a last resort, because there are so many other things that you can try first.

Sunkacola's advice post linked above is a goldmine, so please do give that stuff a try. I know that the things on it don't seem like they would make much difference - I was really skeptical at first that small lifestyle changes could be so important - but there is immense power in making those practices an everyday thing. Fibromyalgia responds to all sorts of small triggers in our lives, which in turn cause flares of our symptoms. Potential triggers are sometimes out of our control, like changes in the weather or stressful life events, but some of them are totally in our control, like whether we practice good sleep hygiene, whether we do too much, whether we take care of our body with diet and exercise or not. Together it all adds up. We can also work on managing how we respond to the stress in our life, and learn to train ourselves to turn down the activity of our sympathetic nervous system (fight/flight/freeze) and turn up the activity of our parasympathetic nervous system (rest/digest/repair) through things like meditation, visualisations, ASMR - literally anything that helps us relax!

A fibro diagnosis is scary, and there are a lot of emotions to process, but don't be too disheartened. I really felt like my life was over to begin with, but now I feel like fibromyalgia has taught me so much, and I take far better care of myself than I ever did before. Through lifestyle changes and taking a handful of basic supplements, I brought my pain levels down to probably around 30% of what they were to begin with. I still have flares from time to time, but they are less intense, and I know better how to take them in stride and give my body a helping hand to work through them. Even more importantly, the pain that I do feel doesn't affect me as much emotionally anymore, and I feel like I have ownership of my life! I know it seems like a lot, but it's something you can and will navigate through.

The last thing I'll say (once again echoing Sunkacola - she's a pool of wisdom!) is that everyone with fibromyalgia is a little different, and we all have to experiment to find our own unique sweet spot. Some things are pretty universal, like learning to pace our activity as much as we can and getting to grips with better self-care, but - for example - if you read back through this forum you'll see that lots of us have had varied successes with different supplements, diets, or medications, so it's not really a one-size-fits-all scenario. It really helps to look at yourself as a guinea pig going through a gradual process, because finding your own balance will likely take a while, but is so worth doing. Not everything you try will work, but that's ok - gradually, you can build up lots of things that each help a little bit until your overall result is feeling much better, and much more empowered.

If you don't feel confident in your doctor's diagnosis, then yes, I'd shoot for a second opinion - just in case they overlooked something that can be treated or requires different care. It can be comforting to have a doctor that's willing to walk through the process with you, whether you try medication or not, so follow your gut if you want more support. In the meantime, come talk to us whenever you want to! 🌻
 

JayCS

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Hi Kerry, apart from echoing above advice, your questioning the diagnosis is perhaps something I can go into a bit.
As I've always had quite a few things going on, and fibro felt right, but not quite right, praps something autoimmune too,
I did get everything checked with 50 docs, incl. a centre for rare diseases, which was all excluded (e.g. MS, Sjögren's...).
Doing everything similar to the Big Advice Post and more, esp. finding specific rarer supps that helped I got back up to 40% activity.
End of Nov my 1st Pfizer jab initiated 25 new or changed symptoms until now, which brought me down to 10% again.
After loads of 'research' I self-diagnosed MCAS and it's now been pretty much confirmed, a few further tests will double that confirmation.
Looking back, quite a few of the symptoms (like bladder) intermingle with fibro-explanations, others are things I had pre-fibro (oversensitivities)
Without the jab there wouldn't have been enough pointers. And now still I'm left with an added even less explored syndrome.
However knowing the symptoms had to do with histamine and mast cells I could start on appropriate supps, which got me back up to 30%.
So the added ideas did help. But my docs couldn't. Maybe the allergologist could've semi-diagnosed earlier, if I'd thought she'd know it (which she does). But she wouldn't've been able to help with supps, it didn't seem.
Bottom line for you? I'd check symptoms which you feel don't fit to fibro. Praps write them here. And try to find an "additional picture/idea".
 
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Kerryb

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Thank you all for your help and advice its very helpful. My issue really is the fact that my dr has never seen me in person, in fact ive never met her, so has done no visual/physical checks to aid in the diagnosis. Therefore, my confidence in the diagnosis is very wary. I also do not feel it is best practice to simply give a person a diagnosis of Fibro and then send them on their way to go and try and cope it with it alone.
 

JayCS

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no visual/physical checks to aid in the diagnosis.... send them on their way to go and try and cope it with it alone.
I can imagine. But the visual & physical checks by my 1st rheum. resulted in him excluding fibro. And the visual & physical checks of "tender points" (no longer approved) by my 2nd rheum. 3 months later, resulted in the diagnosis ... then sending me on my way.... ;-) Probably no comfort. But you said you don't where to turn: What are your options for a second opinion? What about a private fibro expert? As we've said - a lot of us have come to find that turning to self-help, forum-accompanied, is our best bet, using docs more for certain unclear symptoms.
 
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sunkacola

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Thank you all for your help and advice its very helpful. My issue really is the fact that my dr has never seen me in person, in fact ive never met her, so has done no visual/physical checks to aid in the diagnosis. Therefore, my confidence in the diagnosis is very wary. I also do not feel it is best practice to simply give a person a diagnosis of Fibro and then send them on their way to go and try and cope it with it alone.
I fully understand your feeling this way and I am sure in your place I would also want a doctor to see me in person.
The truth is, though, that no doctor can give a better or more accurate diagnosis of fibromyalgia in person than can be done by seeing the results of the tests compared to the symptoms you are having.

There is no physical or visual test for fibro. There used to be, what was called the Trigger Point Test, but that has been proven to be so completely inaccurate that it is no longer being used by any medical practitioner who knows anything about fibro. So while I get what you are saying, and absolutely encourage you to find a doctor you can see in person just for your own peace of mind if nothing else, it is doubtful that it will make a difference in your diagnosis.

Fibromyalgia really means: We have no idea what is causing your symptoms so we are just going to call it by this name. It is an umbrella diagnosis, not a specifically proven one. Having that diagnosis is, though, better than not having a diagnosis for practical reasons like health insurance.

As for diagnosing and sending you on your way.....while I again understand your not liking this, I think that once you become more familiar with this syndrome and what people have to say about it, and once you start taking over your own health management with daily changes and improvements, you will see why Jemima and YayCS and I are not saying that the doctor who did this did anything wrong.

In fact, it is far preferable that the doctor do this than to put you on a bunch of addictive medications or meds with terrible side effects that make things worse, and that is what happens to a lot of people. That happened to me and it only delayed my figuring out how to manage it correctly.

The one thing I DO really wish that a doctor would do, though, instead of just saying "good bye, good luck dealing with this", is hand out some information on exactly how you can go about managing and improving the effects of fibromyalgia.

That is why I wrote the post I wrote. It's nothing brilliant and I am not a doctor, and thousands of others could write something just as good. But it is good, solid, practical advice on how to get started dealing with this and I wish everyone who got this diagnosis would get advice like this. It would make a big difference instead of just, as you feel you have experienced, sort of putting the patient out into the cold by themselves.

Really though, take heart and start applying some of the ideas in that post. Even if you see 50 more doctors, ultimately it will come down to the same thing: You will have to make a commitment to your own health and follow through with finding the things that work for you. And remember we are here to support you in this process!
 

Jemima

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I self-diagnosed MCAS and it's now been pretty much confirmed
Oh wow, JayCS. MCAS sounds to have quite a scary collection of symptoms - I'm so sorry you've been dealing with such a lot. I hope that finally putting a name to what you're experiencing is reassuring - it's fantastic that you've already identified some targeted supplements. I'm thinking of you a lot! 💪
 

Jemima

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My issue really is the fact that my dr has never seen me in person, in fact ive never met her, so has done no visual/physical checks to aid in the diagnosis.
I'll just third what the others said above. There is no physical exam or visual check that can confirm fibromyalgia - as Sunkacola said, there used to be, but it's now considered inaccurate and redundant, and has been dropped from diagnostic manuals. Diagnosing the condition relies upon patient testimony of symptoms, and ruling out any other causes. Perhaps knowing that will give you some peace of mind, but for sure, it helps to find a doctor that you trust and who you can speak to face-to-face when you want to! Of course, if you have any visual symptoms like rashes or swelling, then defo fight to be seen. Best of luck to you, Kerryb 🍀
 

Creola17

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I'll just add to the great advise above, maybe try an alternative doctor. That's where I ended up getting help 6 or 7 years ago. One of the doctors was suffering from fibro and hasimotos so he really got it. They had me change my diet and use some supplements. I was unable to get out of bed until they helped me. The medical doctors just stress me out, no help. I stopped eating grains( not because of gluten, because of the poison they spray on wheat), sugar, dairy and night shades ( due to hasimotos).
Unfortunately I still get flare ups but not always real bad. I make pain lotion with essential oils and marijuana infused coconut oil. Also use lidocaine.
I hope you find something that works for you.
Hang in there, life is worth it!
(((gentle hugs)))
 

NY Farmwife

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Kim, having fibromyalgia is a lot like owning a house. Your body and your house both need routine maintenance. Sometimes they need extra time and attention. If your roof leaks, you fix it. If your body aches, you do physical therapy, take your medications, have warm baths, heating pads, whatever works for you. If your house needs insulation, you get it. If your body needs a back or knee brace you get it. Until there is a definite cause of fibro known and a 100% effective treatment, you will be treating each individual problem as it comes up. You'll have to be inventive. You'll have lots of doctors' visits--at least at first. Your G.P. should be someone who will work with you, someone who understands that you are willing to do the work, but may need help from time to time. You're in this for the long haul. So should your docror be.
 

FarmerJoe

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I have been diagnosed with Fibromyalgia for several years. I went through at least 50 doctors attempting to find a cure. What I really feel would be most helpful at this point would be a Fibromyalgia support group either local or online. I haven't been able to find one but feel this would help all of us, especially newly diagnosed like KerryB. Are there any suggestions where this valuable resource could be located? I enjoy reading the valuable input here. Thank you.
 

Jemima

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I have been diagnosed with Fibromyalgia for several years. I went through at least 50 doctors attempting to find a cure. What I really feel would be most helpful at this point would be a Fibromyalgia support group either local or online. I haven't been able to find one but feel this would help all of us, especially newly diagnosed like KerryB. Are there any suggestions where this valuable resource could be located? I enjoy reading the valuable input here. Thank you.
Hi FarmerJoe,

I'm so sorry that you had to go through all of that and didn't find the relief you were searching for. It's a tough reality that, for now at least, there is no known cure for fibromyalgia. Many of us seem to find quite a bit of relief through a combination of practices that are uniquely suited to us, but of course finding those useful tools isn't always easy, and it's always only a partial aid. It's also a shame that many doctors aren't sympathetic or well-informed - I guess that's why so many of us wind up doing our own research and becoming determined self-advocates.

In terms of support groups, you can think of this forum as an online support group if you want to - it's anonymous, and we can all discuss our condition and support each other on an ongoing basis. For local support groups, the best thing to do is Google "fibromyalgia support group" along with your location - so try your nearest towns one by one and see if anything pops up. There are lots of fibromyalgia support groups all over the world, but sadly some areas are not as well served as others. If there's nothing close to you, and you wanted to change that, you could perhaps explore whether you could start one!

It's lovely to hear that you're finding value here - long may it continue, and the best of luck to you in managing your fibro journey.
 

sunkacola

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What I really feel would be most helpful at this point would be a Fibromyalgia support group either local or online.
That is essentially what this forum is. We are here to offer support, encouragement, and what information we have to others with fibromyalgia. So you have already found your online support group!
 
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