This afternoon, a GP colleague suggested that I may not have fibromyalgia, but that the symptoms are a result of rapid reduction of steroids.
Has anyone else experienced this?
My aching joints etc only started once the steroids stopped, so he may have a point.
Confused???? You bet 😉
Too rapid reduction - or PMR turning up to play again. I still maintain fibro is often a lazy doctor's get-out...
Sorry Pro , meant to send this reply to Linda and hit reply to you , but don't want to type it again!!
A lot of Doctors really don't have an idea about Fibromyalgia .
Even the Specialists get frustrated by the fact that some Doctors will run for a Fibro diagnosis , just like they do with an Irritable Bowel Syndrome conclusion just to put something on paper because it does make their job more difficult in the Medical Community in building real awareness of the Syndrome , how seriously Professionals should respect it, and how severe it can be.
And the answer here is also more complex too .
If you already had a Fibro diagnosis before PMR then it's likely that the symptoms are getting worse if you taper steroids too quickly increasing the Fibro activity as well as the possibility of an increase in PMR Pain . Fibro is triggered by the extra stress on the body just like PMR.
In this case , as for me , both your Fibro and PMR symptoms and treatments need to be monitored and adapted to the new changes . One treatment will not do the job alone.
They need to treat the Body not the Syndrome for success.
If the Fibromyalgia diagnosis came after your PMR began , you may or may not have Fibromyalgia .
Fibromyalgia activity can be triggered by the body coping long term with another disease or rapid drug changes , so it still needs to be diagnosed properly and treated .
But it is also possible that you don't have Fibromyalgia and have some other type of Peripheral , Pre Diabetic or Steroid Neuropathy happening which can more commonly occur from ONR and Steroid Use than Typical Fibromyalgia.
If the increased pain , even if it is Nerve Pain and not PMR Pain is only appearing in the places common to PMR and no other Pain Points on the body , you can be suffering from a type of Neuropathic Condition and not Fibromyalgia.
And then , of course , it could be all three , Fibro , too fast taper for PMR and Neuropathy!
All three conditions can respond badly and be triggered by a taper that is too quick or increase in Disease Activity if another.
Sometimes though Fibro and Neuropathy Pain and activity may have been masked by higher doses of Steroids and only their medications need increasing or changing for better results.
Some Neuropathy issues can be caused by Steroid use and increasing steroids don't actually treat the issue. So , you see it is more complex.
Rather than making knee jerk decisions , they would be better actually sending you for proper investigations to a Neurologist to get a conclusive diagnosis for Fibromyalgia
and/ or Neuropathy issues.
After that , a referral to a Pain Management Clinic is very important if more than PMR or Steroids alone is the cause of your symptoms , because you often need a more Specialist eye than a GP , or Consultant who isn't a Pain Specialist , to make the right adjustments and increases in Nerve medications as your taper of Steroids overtime.
I'm definitely going to keep the appointment on Sunday with the neurologist.
And now, thanks to your pointers, I'm more prepared.
I do feel that I've been given the runaround somewhat by the doctor's I've seen so far.
Curiously, considering I work with doctors every day, I've been quite meek in consultations.
But enough is enough. Thank goodness for the people on this forum, and thank you for the info.
I'll keep you posted.,☺️
Yes , I look forward to hearing your update and I hope we both get a more considered response from seeing Consultants this week.
It's trying to reeducate them to look at the whole body and it's Health Problems not just creating a patchwork of treatments one Condition at a time that is one of the biggest stumbling block if you have more than one issue at a time.
If they did I think they'd find the Patient) Doctor experience more positive as well because they would before likely to have success.
It really wouldn't surprise me. I have a diagnosis of fibro from the pain clinic. I usually report it as fibro/chronic pain. There is one way to tell if it is pmr rather than fibro. Pred doesn't touch the fibro pain and my pain killers didn't touch pmr pain. 🤔
Hmmmm . It's never straightforward is it?
I'm going to see the neurologist on Sunday and get their take on it
I tend to agree. The consultant was very dismissive.
Reply from Blearyeyed - so you don't miss it!
"Sorry Pro , meant to send this reply to Linda and hit reply to you , but don't want to type it again!!
A lot of Doctors really don't have an idea about Fibromyalgia .
Even the Specialists get frustrated by the fact that some Doctors will run for a Fibro diagnosis , just like they do with an Irritable Bowel Syndrome conclusion just to put something on paper because it does make their job more difficult in the Medical Community in building real awareness of the Syndrome , how seriously Professionals should respect it, and how severe it can be.
And the answer here is also more complex too .
If you already had a Fibro diagnosis before PMR then it's likely that the symptoms are getting worse if you taper steroids too quickly increasing the Fibro activity as well as the possibility of an increase in PMR Pain . Fibro is triggered by the extra stress on the body just like PMR.
In this case , as for me , both your Fibro and PMR symptoms and treatments need to be monitored and adapted to the new changes . One treatment will not do the job alone.
They need to treat the Body not the Syndrome for success.
If the Fibromyalgia diagnosis came after your PMR began , you may or may not have Fibromyalgia .
Fibromyalgia activity can be triggered by the body coping long term with another disease or rapid drug changes , so it still needs to be diagnosed properly and treated .
But it is also possible that you don't have Fibromyalgia and have some other type of Peripheral , Pre Diabetic or Steroid Neuropathy happening which can more commonly occur from ONR and Steroid Use than Typical Fibromyalgia.
If the increased pain , even if it is Nerve Pain and not PMR Pain is only appearing in the places common to PMR and no other Pain Points on the body , you can be suffering from a type of Neuropathic Condition and not Fibromyalgia.
And then , of course , it could be all three , Fibro , too fast taper for PMR and Neuropathy!
All three conditions can respond badly and be triggered by a taper that is too quick or increase in Disease Activity if another.
Sometimes though Fibro and Neuropathy Pain and activity may have been masked by higher doses of Steroids and only their medications need increasing or changing for better results.
Some Neuropathy issues can be caused by Steroid use and increasing steroids don't actually treat the issue. So , you see it is more complex.
Rather than making knee jerk decisions , they would be better actually sending you for proper investigations to a Neurologist to get a conclusive diagnosis for Fibromyalgia
and/ or Neuropathy issues.
After that , a referral to a Pain Management Clinic is very important if more than PMR or Steroids alone is the cause of your symptoms , because you often need a more Specialist eye than a GP , or Consultant who isn't a Pain Specialist , to make the right adjustments and increases in Nerve medications as your taper of Steroids overtime"
Thanks Pro , you are the Brains to my Brain Fog !!! 😋😂😂😂😂 xxxx😘💐
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