Undiagnosed and tired of being tired.

[Jemima]

Sunkacola what are other things that fibro can be mistaken for ,see I’ve never had an scans for it only blood tests and the annual rheumatology poke about ,online so far I’ve read m.s, anemia b vitamin def , thyroid problems are there any others my chiropractor thinks my symptoms fit more with m.s but they just won’t test me because of the fibro diagnosis

I know you didn't ask me, but I'll just chuck lupus and lyme disease into the mix!

 

[Auriel]

I don’t mind you answering jemima , you can answer all day long I don’t think our surgery test’s for lymes I think it’s a little too exotic

 

[Auriel]

Hello fems how you feeling?

 

[Jemima]

I don’t mind you answering jemima , you can answer all day long I don’t think our surgery test’s for lymes I think it’s a little too exotic

Awww, thanks Auriel

The UK is notoriously bad for looking at lyme disease, even though it's very well documented that ticks carrying it are all over the UK now. A friend of mine had lyme and was incorrectly diagnosed with MS in England. By the time someone actually figured out what was going on she was incredibly ill, couldn't walk, and was stuck on crutches/in a wheelchair. Eventually, she had private treatment in Germany (at great expense!) and made a full but long-winded recovery. I don't say this to alarm - the chances of catching lyme are incredibly slim and only relevant in the countryside - but to highlight that UK docs are known for dropping the ball on this one!

Advanced lyme symptoms according to the CDC:

• Severe headaches and neck stiffness
• Additional erythema migrans (EM) rash rashes on other areas of the body
• Facial palsy (loss of muscle tone or droop on one or both sides of the face)
• Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
• Intermittent pain in tendons, muscles, joints, and bones
• Heart palpitations or an irregular heart beat (Lyme carditis)
• Episodes of dizziness or shortness of breath
• Inflammation of the brain and spinal cord
• Nerve pain
• Shooting pains, numbness, or tingling in the hands or feet

 

[Auriel]

Wow , maybe I should book myself into the vets instead as a large poodle with suspected lymes, I dont have all the symptoms above ( thank god!) but I have a few, maybe a lot of people have been fibro misdiagnosed , I think mine was stress related ,oh I don’t know , I got tired of going private for things it’s a drain on my account, I’m glad your friend is better x x x

 

[Jemima]

Wow , maybe I should book myself into the vets instead as a large poodle with suspected lymes, I dont have all the symptoms above ( thank god!) but I have a few, maybe a lot of people have been fibro misdiagnosed , I think mine was stress related ,oh I don’t know , I got tired of going private for things it’s a drain on my account, I’m glad your friend is better x x x

Thanks, me too

Funny, on the poodle!!

I think the symptoms are different in a lot of ways - stuff like the rash, facial droop, and the joint swelling are not normal in fibro. But, I think those of us who have it really hard are the ones with several co-conditions. When symptoms from different things all layer up it's a freaking nightmare to tease out what is coming from where. That's where the master sleuthing comes in!

Paying to go private sucks. It sounds to me like healthcare in the UK has really gone downhill since I last lived over there!

If your instinct is pulling you to stress being the gremlin at work, there's a lot to be said for focusing on that and seeing where it gets you.

 

[Auriel]

Yes iIt’s very expensive too and even then you don’t aways get answers ? I’m sure mines trauma related ( didn’t have fibro before that) I’m on another forum too( I’m cheating on this one haha) a few of the girls on it have ended up with chronic pain and chronic fatigue even tho they’ve not been fibro diagnosed but I recon there’s definitely something in it, also some war veterans have ended up with fibro symptoms when they’ve come back from the wars

 

[Auriel]

I forgot to mention the other forums not a fibro one it’s for people who’ve been through stressful situations with certain oeople

 

[Jemima]

I’m on another forum too( I’m cheating on this one haha)

I think forums are great for all sorts of things - finding people that have gone / are going through something similar is so empowering! I also read a lot about vets with chronic pain, and am sure there's a big pattern with trauma.

Have you come across Curable? It's a recovery app and media outlet. The app itself is premium (not something we can necessarily all afford!) but they put out quite a lot of articles and podcasts for free about chronic pain - often with guest appearances from specialists - and have mentioned the trauma connection quite a bit. It's quite interesting, because even though they market towards fibro sufferers they always approach chronic pain as something that can potentially be cured. For us lot, a cure is probably not that realistic, but improvement has to be possible. You might find some of their stuff useful/insightful!

 

[Auriel]

Morning jemima true, fibro is a hard one to fix I’ve read of only a handful of people who have , it’s so weird it was only a few days ago one of the girls on the other forum mentioned that exact app but I was suspicious cos fibro is a really awkward one , and yeah it’s nice to connect with people who have had nearly identical experiences to you . I just like to connect/ support and advise cos I’m at a stage of personal recover now where I can feel I can do that

 

[JayCS]

Girls, you almost managed to confuse me talking about vets as poodle veterinarians and war veterans in the same thread on the same day....

"It sounds to me like healthcare in the UK has really gone downhill since I last lived over there!" (@Jemima)
The stuff I hear on a UK forum it doesn't sound good at all, not getting to your docs, not being able to change docs easily. But in a video about the international fibro controversies 2021 conference (even Clauw was there) that's just been held virtually, in June, a German doc, Häuser, stressed that OTC stuff - meds, supps etc. are not paid for by German insurances, which was a reason for the UK representative making the video to be a bit happier about the NHS etc., which apparently does if your doc is willing to. I must say tho that my 2 semi-private insurances do pay for almost all of what I do, and I manage to keep the costs for supps affordable as I don't continue taking anything I'm not dead certain is making a difference.

I hadn't heard of Curable myself, but I've just looked in at <curablehealth> and have had a closer look at 2 other online programmes, using the trial stuff they offer, plus other people who talk about curing fibro, and conclude again and again, as you say Auriel, suspiciousness is very appropriate... OTOH there are probably a lot of people who want/need to be taken by the hand and led to self-discipline, esp. if fibro fog and fatigue kicks in often.
Curable itself describe its programme as Step-by-Step Guidance, Pain Science Lessons, Dynamic Meditations, Brain Retraining Techniques, so the pain management part, not the biochemical part, which is good - if they do it well and you don't have cheaper/better resources.
It'd be fairer for them to admit that 'cure' doesn't mean being rid / free of the pain itself, but getting rid / free of it determining your life and happiness, which can reduce some of the pain in the process. That's what serious pain management people say. But then the larger-than-life claims are not only scam, they are - not only for financial reasons, e.g. many youtube videos do it too - trying to motivate people more, by pretending to do more than they can, because the people they are aiming for are those who can't manage to bring up much motivation and will be even less inclined if they'd read they won't get rid of it, just learn to live with it. If they read that quickly (superficially) it says what they are doing already: living with it; so they can save the effort....
And you could even view the money part of it as part of the treatment: If it costs quite a bit, some people are going to keep on with it, the better they believe it may/must help, incl. the placebo effect...
Similar for the FM/a-test: If people need it to get some (pseudo-) peace of mind about the diagnosis... let them believe it. And some US insurances pay for that, I think because it is more likely cheaper than to pay for people getting every part of their body MRI-scanned just to make sure it's nothing else. If they "believe" it is fibro then they're going to be more placid about checks & treatments...

 

[Auriel]

Jemima we almost managed to confuse THE jaycs , I think we should have an award or prize or something

 

[Jemima]

Jemima we almost managed to confuse THE jaycs , I think we should have an award or prize or something

I manage to confuse myself on the best of days - at least we're all in it together!

 

[Auriel]

Hi jemima I wanted to ask about smoothies I been getting bad nausea ( actual sickness) last few days could be fibro , sertraline girl tummies or all 3? I hate ginger though , are there any good ones for nausea that disguise the ginger a lot ?

 

[Jemima]

Hi jemima I wanted to ask about smoothies I been getting bad nausea ( actual sickness) last few days could be fibro , sertraline girl tummies or all 3? I hate ginger though , are there any good ones for nausea that disguise the ginger a lot ?

Hi Auriel,

Ugh nausea is the worst - I'm sorry you're dealing with that!

Ginger is such a strong flavor, I'm not sure that anything will really mask its taste. Apparently banana and mint are also good for nausea, so perhaps focus on one of those as your key ingredient, or combine them together (meant to be yummy!)

If you're nauseous, probably best to make the smoothie on the thinner side, and if all else fails perhaps sip on coconut water?

I hope you feel better soon