Symptoms worsning

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janmac

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Dec 29, 2022
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DX FIBRO
Diagnosis
05/2019
Country
UK
I was diagnosed with a fibromyalgia like illness about 8 years ago, by a rheumatologist. I have had blood test meany times for arthritis. All negative.
My symptoms used to be mild. I have recently been re- examined by GP and I have none of the sensitive touch areas. I have had physio and walk every day and do other light exercise. My pain is much worse mostly in lower back, shoulders, neck, legs, knees and feet. I have also been diagnosed with CFS. I always believed from doctors and other fibro advice sites that it did not get worse and wonder if I am doing things wrong or it is a wrong diagnosis.
 
Hi janmac,

Welcome to the forum. Of course, we can't tell you anything about your diagnosis, but I can tell you that the sensitive touch test for fibromyalgia was debunked as worthless a long time ago, and any doctor still using it is far behind the times and knows little about fibro. You might consider getting an opinion from a different doctor who knows more about the syndrome.

Fibro is not a progressive syndrome. However, as we age and use our bodies, sometimes things that would be happening anyway but perhaps in a less noticeable way start to appear and the fibro makes them worse. Generally, if a person has only mild symptoms the diagnosis of fibromyalgia is not reached, although that will of course vary.

As for doing anything wrong, what are you doing that you suspect might be wrong?
Or, if that is not the right question, then why do you think it might be something you are doing?

CFS is another syndrome that will make everything else exaggerated in your body, so the two together may be what is causing your pain to get worse.

Taking the right steps to take good care of yourself if the best way to manage fibromyalgia. This involved your diet and exercise and mental health and many other things. If you'd like to read more on that, here is a post I wrote about it with suggestions for how to determine the best way for you to take care of you and lessen your symptoms.

One other important thing. Even if you have fibro, it doesn't mean that any new symptoms you experience are necessarily attributable to that. Any new symptom, new place of pain, or worsening of pain should be thoroughly checked out by the appropriate doctors and specialists. there are many other conditions that share symptoms with fibro. Make sure you don't have one of them.

 
first off - Welcome!

Next - the so called "pressure points" are no longer a part of the criteria for a fibro diagnosis - pretty much anyone can have pain at those points if pressed hard enough.. Any doctor that is still relying on those points is not up on the current information (with the current criteria being from 2016 - so hardly "new").

By "blood tests for arthritis" I am guessing you mean rheumatoid arthritis?
There are several different types of arthritis, and there is no blood test for the most common - osteoarthritis - which is a "wear & tear" type. The only way to definitively diagnose osteoarthritis is with imaging - x-rays, CT or MRI.

pain in the legs, knees and feet can all be symptoms of lower back problems, and that bears further investigation - same with the neck & shoulders... these issues could be caused by osteoarthritis in the spine and have nothing to do with fibro.

There is such a thing as a "fibro flare" where the pain does get worse for a time, but eventually settles down again.. however, it is always worth investigating new or worsening symptoms - dont "assume" anything.

(and sunkacola posted as I was typing.. )
 
My pain is much worse mostly in lower back, shoulders, neck, legs, knees and feet.
Hiya - for me the main question would be about the type of pain: if you think these are more an overall (severe) "Ache" from overdoing it, or not, then maybe from an inner condition, or if they are separate local sharper pains.
Local pains I('d) tackle one after the other using exercises, stretches, acupressure, a massager gadget and praps creams of choice. Pain/Ache from overdoing it could be improved by adjusting pacing better. Other inner conditions if you can't get any diagnosed could be tackled with supps and coped with pain management of various kinds.
 
Hi thanks for your advice. The pain is mostly aching, so you may be right about pacing.
I gave up my job 2 months ago as a hotel housekeeper and I am begining to improve.
I have found though that each time I have a flare up all my symptoms have progressively become worse. This is a question I must ask my consultant.
 
Hi thanks for your advice. The pain is mostly aching, so you may be right about pacing.
I gave up my job 2 months ago as a hotel housekeeper and I am begining to improve.
I have found though that each time I have a flare up all my symptoms have progressively become worse. This is a question I must ask my consultant.
Yeah, does sound like it then. Hotel housekeeper I can imagine is mentally and physically draining, depending. I'm finding in the last 2 months that reducing the intensity and speed of my activities by a third to 70% allows me to treble or quadruple the amount of activities per day from 2h to 6 or 8h, just gently pushing thru, but respecting need for rest.

A consultant can try to again look for new possible conditions, which is an essential basis. But if they are only getting worse and not changing in their type the bets are that there's nothing new, just your body isn't coping with what you are "doing to it". What consultants generally do if people tolerate meds is then test if typical or untypical one helps. You can be lucky and it helps enough quickly, if you're not it can harm. Generally most meds for us tend to suppress symptoms and cause others, rather than tackle causes in my opinion.

Here I've listed 13 reasons for our symptoms to become progressively worse despite fibromyalgia not being a progressive condition, maybe some of them are a possibility?
 
Hi-is there a link to your 13 points that I can view? Thanks 🤗
 
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