What is wrong with me? Painful thighs and flu feeling

[HJB2021]

For the last 4 years I have suffered with a strange illness, it comes and goes for months at a time (even years) the longest I’ve had without it is a year. I have no idea what it is but it’s making me feel so unwell, I have very achy thighs but this unwell feeling like I’ve got the flu and scratchy throat is the worst. It got extremely bad during my pregnancy.

Ive had lots of bloods, lupus was negative, thyroid was okay, all my vit were normal. Nothing flagged up, apart from inflammation.

Doctors won’t listen, I’m feeling so alone and scared.

can anyone help? X

Sorry you are having this OP. Could it be chronic fatigue syndrome, ME or fibromyalgia maybe?

Agree with CherryRipe - get a referral to a rheumatologist for fibromyalgia.

Fibromyalgia is very close symptom wise to Lupus so if they sent you for a Lupus test that would be my guess. Ask for a Rheumatology appointment.

Sorry I should have added I have seen a rheumatologist but he said nothing he could help with. Basically told me to learn to live with it.
I don’t suffer with fatigue so unsure if it could be fibo?

Did he say that the condition couldn't be treated therefore he couldn't help OR he couldn't help because he didn't know what it was? Massive difference.

Fibromyalgia can't be treated but it can go through phases of flare-ups. Some peoples good phases mean they are almost normal whilst others good phases means only half as normal. It varies so much.

My fibro was mainly exhaustion for many years with pain secondary, i used to joke i had sleeping sickness, the last five years the pain has been mostly unbearable. I'm just exhausted from the pain. It effects people differently.

He said he couldn’t help because he didn’t know what it was, he didn’t mention fibo. Also my symptoms don’t tend to get worse after exercise. Can fibo disappear for a year at a time?

thanks

Autoimmune and neurological conditions are never cookie cutter with symptoms. There can be classic presentations then alot of weird stuff that can differ from person to person. Things can go into remission too for indeterminate periods. Viruses, vaccines, stress/trauma & lots of other things can retrigger them.

I'd try a different rheumatologist - one that specialises in fibromyalgia. They're not all equal.

Agree with Ceci. If he hasn't diagnosed anything then he shouldn't be telling you to live with it!

I waited a year and a half to see the rheumatologist, I was so upset that he couldn’t help/wouldn’t help. He basically said not everyone gets a diagnosis and have to live with the pain.

Ive always thought it’s been more of a hormone imbalance as my pregnancy triggered it so bad then after giving birth 4 months later it disappeared!

Usually the default is them saying its fibromyalgia if they can't diagnose anything, thats the weird part.

It can start after a stressful event like an injury, illness, the death of a loved one or childbirth.

https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

Your rheumatologist's attitude is reprehensible, and just a stone's throw away from "it's-all-in-your-head" territory.

Remember that pregnancy lowers your immune system, and frequently fibro is triggered by a compromised immune system. Frankly, I think that one day they will find a direct correlation between fibro and Epstein-Barr Virus, though unfortunately current tests for EBV are not sensitive enough to detect it when it hides out in the body (though this is changing: they're finally finding long-suspected correlations between EBV and MS, for example).

I have had fibro for 22 years, and while it was good to get a diagnosis, singularly the best thing I did after that was to start exercising. But keep it gentle: yoga, walking, etc. It may be the last thing you want to do, but get up and do it. Start with a walk of 5 - 10 minutes; then do that every day until it becomes habitual. Don't overdo it: less is more when it comes to pace and intensity. When I first started this, I had to drag myself off the sofa, crying, and it took everything I had to get two blocks. Do it. Doing a yoga class once or twice a week in addition to walking would be even better. Hatha or Restorative/Yin only. If you can't afford it, there are some good classes online. And give up sugar. Both of those are good whether you have fibro or not. But you should never have to "live with" pain. How dare he?!

@CeciNestPasUnPipi
Brilliant post and great valid points especially EBV & other herpes family viruses as triggers. The mind can affect the body and vice versa. There is also damage from flouroquinolone antibiotics ie ciprofloxacin. Google 'floxed'. Sorry you have fibro, I have 2 freinds with it and it's very unpredictable.

@HJB2021 Maybe you could ask your GP to see an endocrinologist if you suspect hormones? Yes NHS waiting times are dire. I've been waiting 15 months to see the neurologist.