I don't know if I am diagnosed or not ? Frustrated.

[muddledmuppet]

Hi amazing people.

36yo male, I've been going to the GP for year now trying to figure out my constant tiredness, energy crashes, random stabbing pains, muscle aches, arm and abdominal tremors, foot and hand aches, constant coldness, random sporadic pins and needles, brain fog, anxiety, dry eyes and so on. No useful info in the blood tests, so have been trying Amitriptyline for the last 6 months with no noticeable change... I finally saw a rheumatologist last month, and they sent me back to the GP with a letter saying "No blood tests results showing inflammatory arthritis, so they're not my problem, I think it might be fibromyalgia causing their symptoms? Oh but they do have arthritic deformity in their hands and feet. But their bloods are all fine. You could try duloxatine instead since amitriptyline isn't doing anything?"

So eventually I got to see a GP with that, and they said it could be? But there just want me to take the duloxatine and go away I think. I've said I want to try doing some diet changes first, and persuaded them to book me in for vitamin / minerral deficiency tests to check if there's anything there...

So, I don't even know if that counts as a diagnosis? My GP 4 or 5 months ago said, "maybe CFS?". I'm pretty frustrated and exhausted. It's so hard to stay positive and not spin into a negative thought loop. I really feel like the docs just want me to take more SSRIs and leave them alone. I don't *want* a diagnosis, per se, just to either feel better and have energy again, or else to have some kind of concrete information I can work on.

*Sigh* sorry for rambling and moaning. I don't know if this is the right sub, or if I'll ever get a diagnosis or anything.

 

[BlueBells]

Hi @muddledmuppet Welcome to the forums.

Heads up, if you want to catch a particular persons attention, just put the @ symbol in front of their name, and a drop down will show the name and make it easier, also.

Please browse around and check out what others are saying, we are a very supportive group here, and I have read so many of your symptoms from others.

It seems common for doctors to just throw pills at us and shove us out the door, but gradually they are taking fibromyalgia a bit more seriously. I am not on any medication, so far, but many are.

Do stick around, and converse, as this is how we help and support each other. Again, welcome

 

[SBee]

Hiya @muddledmuppet
I don't want to throw a spanner into the works, or complicate things - I totally agree with @BlueBells.

But, there is sometimes seronegative rheumatoid arthritis that has all the usual RA symptoms but doesn't show up as a positive in blood tests? As I say, sure sounds like fibromyalgia from your symptoms.

May be worth doing a bit of read As you seem to mention deformaties? But I guess a rheumatologist would have checked this out??

As I say I am not medically trained, but the same investigations are happening for me atm. There is UK website Versus Arthritis that has a bit of info on this, and indeed they are happy to answer questions.
Oh, and a belated hello and welcome.

 

[muddledmuppet]

Hi Bluebells, Sbee,
Thanks .

> May be worth doing a bit of read As you seem to mention deformaties? But I guess a rheumatologist would have checked this out??

I'd have thought so? But I'm rubbish at doctors appointments. I try to write everything down before I go, but then get scared or forget to actually get out my list to talk with them about. I'd wondered about Seronegative ra - I guessed that was why I was referred to rheumatology?

I didn't know that the "deformities" were actually there until I got the letter a month later saying "I think it might be all due to fibromyalgia" and discharging me from seeing them again. I thought my hands looking weird was just in my head.

I'm realising I've been joking to myself "life is pain, Highness, anyone who tells you differently is selling something" for *years* now, and squashing discomfort and pain down and trying to keep busy and not "in my body" - but the more aware of my body I become, the harder it is to just ignore the random stabs, burning sensations, aches, etc etc... Which then throws me into the whole "it's all in your head, you anxious hypochondriac" and that whole lack of confidence and just wanting to hide and not be a burden thing.

*Sigh*

Sorry for whining. Thanks for welcoming me

 

[BlueBells]

@muddledmuppet
it's okay to whinge here, we all get that

 

[SBee]

Hi @muddledmuppet ( I Think it was BlueBells who welcomed me first - @BlueBells hello!) And gave me the useful tip of putting the weird @ sign followed by a user name ( no gap) indirect a reply to a specific person. When you begin to type the user name it comes up in a little box so click that to save time.

I totally get the nervousness at medical appts. I think we are so desperate to make the most of the appt, it's like our one big chance? So I take a few simple notes to help me keep on track and also.take a few important notes ( everyone word helps ) as I forget what's said.
This time I'm asking for a written follow up of the appt if possible. Having someone in with you may help you??

But the feeling of " it's all in my head", or knocking your own self confidence thing? Yeah, I really do understand that.

BUT it is real the symptoms and the way it affects you mentally\emotionally. You have written ' proof ' that you have been diagnosed with fibromyalgia, so hang into that thought.

And use this forum because everyone else, in varying degrees and symptoms are on here just because they feel as you do.

 

[JamieMarc]

Your experience sounds exactly like mine for 7 years. Constantly being sent to one doctor after another but nobody knowing what's going on. It was only after seeing probably six different specialists and physical therapy that I ended up being referred to a pain management doctor, and that is where I received my diagnosis of fibromyalgia.

I do not know what country you are in or what options you have regarding setting up your own appointments or having to get referrals, but I would push for seeing more specialist first, such as a neurologist and an orthopedist. After that, if you get no relief or satisfaction, I would see about getting in to see a doctor who specializes in pain management. Frequently they will have other specialties as well, such as neurology or orthopedics.

I know you're frustration all too well, and your story brings back sad memories of that time for me. I wish you the best, my heart goes out to you, and please keep us informed. We are here to help. Even if that just means you need to vent.

 

[BlueBells]

Hello @SBee

If I see newbies, I like to say hi. Sometimes it's nice to know that your post has been noticed.

I know it felt welcoming for me, I can't remember who it was now, but I think we all get that way, we like the site, the chat, and want others to feel welcome.

I love reading your posts, you are so bright and energetic. Hugs

 

[SBee]

Oh thanks @BlueBells it's true that someone welcoming you on a forum can be an enormous boost, because we are putting ourselves in a bit of a vulnerable position. Most of us have been through the mill trying to get a diagnosis in a range of symptoms that dont always make sense to even ourselves, let alone friends and family ( and sadly it can seem some medical people ). So to be welcome on a place where people can identify with symptoms and are also living with them, and offering support is actually a bit thing.

In the last couple of years I've been through some health stuff that mentally took me to a very severe dark place. By getting meds right and some therapy and essential support from others going through the same thing I somehow got out of it.

Having some humour back, and feeling able to share of offer support, is a bit of a barometer that mentally I am getting to be ok. Course I still get the bad days but I know what to do\where to go if I think it's sliding. Best I can, I choose to try to accept things because in all honesty I don't have the spare energy to spare on things I simply will never be able to alter.

Hugs to you too!

 

[BlueBells]

@SBee @muddledmuppet

Years ago I joined a mental health site, and over a week or two, I'd made maybe half a dozen posts, and not one acknowledgement. I found that actually made me feel so much worse, it was like I was rejected, definitely not welcome, ignored, all of that negativity.

Some time later I did get an odd response now and then, but it just didn't feel "right" somehow. First pinions go a long long way.

If possible, I will never leave someone "hanging" like that, it's just too hurtful when most people are already in a low place when they are searching for support.

(maybe it's that dopey empath/caring nature I've been lumped with )

Hugs and I'm still learning to train (hahahaha) my little gremlins

 

[SBee]

Oh @BlueBells that's a brutal thing to happen, when We are out our lowest ebb even just a few words in reply to say someone's listening and you're not alone can make the biggest difference. I too would have felt so abandoned.
am sure the majority of us aren't medically trained but can add some support and our own experiences ( as much nor little as we wish to share as an individual ) and it's surely just a basic human kindness to spare a word if we are able for someone who needs it.

I too try to respond in similar posts as I know what it's like to be on a receiving end of support so if I can return, I do so.

You know I joined this particular fibromyalgia forum as someone posted its less stuffy than some.

I know I'm in the right place!

Take care (and as a possible empath remember to try to protect yourself too)

hugs to you x

i adore the gremlin dragonised wording btw