I have recent diagnosis of fnd following acute episode of peripheral neuropathic pain, tingling and numbness, as well as, weak and poor coordination in legs and exhaustion. Previously has "Loin Pain Haematuria" (LPH ) for years until surgery to sever nerves to kidney. Also had "facial pain syndrome."
All seem to have started following infections of some kind.
Is this common?
I was given antibiotics a couple of weeks ago for an unrelated condition and my fnd symptoms improved hugely. This used to happen with my LPH as well but the pain would always come back.
Has anyone else found antibiotics help their symptoms?
You should be aware that ME/CFS is now being routinely diagnosed as FND if you see a neurologist. ME/CFS usually starts after an infection, usually flu-like. It includes a number of symptoms that are multi-system. It isn't just about fatigue. The best set of criteria for diagnosing it is the Canadian Consensus Criteria, which you can find at
Unfortunately, if you're like me and live in the UK, you are unlikely to get diagnosed by this criteria even though ME/CFS researchers are increasingly recognising them as more reliable than other diagnostic criteria, particularly those used in the UK.
Unfortunately, here in the UK research has been dominated by a few very powerful psychiatrists, some of whom are connected to Dr Stone, who believe ME/CFS to be 'functional' even though there is a wealth of evidence that shows it is not. ME/CFS is not only about fatigue, it effects the brain too. A lot if people with it have gait problems, cognitive difficulties, muscle pain, muscle fatigue, head aches, flu-like malaise and a host of other symptoms, all of which get worse after minimal activity.
Abnormalities in the immune system, mitochondria and in various other places have been found, but because of the influence of these powerful psychiatrists, this evidence is routinely ignored. You are unlikely to get any tests that show these abnormalities unless you can afford private treatment.
Dr Montoya, of Stanford university has found that many people with ME/CFS have on going infections, some viral others bacterial. He has been treating patients with antibiotics and antiviral s and finding that a lot improve. You can read about his research atmed.stanford.edu/chronicfat...
Whilst agreeing with much of what you say, just to correct one thing. Dr Jon Stone in Edinburgh is a Consultant NEUROLOGIST, not a psychiatrist. His understanding of "functional" symptoms is that they ARE "real" and DO have a cause within our physical bodies, just that this is within our brain and currently of an unknown systemic operating reason. His research is ongoing, as is that of Professor Mark Edwards at St. George's in London, whose understanding of FND is along similar lines. There are other researches ongoing within the UK too.
These professionals DO acknowledge it is not simply a "psychiatric issue", but as yet the brain/mind is still too unknown for them to define the cause. It seems likely currently to be a "perfect storm" involving vitamin/mineral deficiencies, damage to nervous system, excessive brain stimulation, etc. The reason for including CFS/ME into the "functional" umbrella is that the brain IS affected (by whatever the true cause, yet to be determined) and that in turn loses correct connections to our nervous system and other physical bodily functioning; certainly our muscle control. From the information provided by many patients, almost certainly B12 plays a part and this is being looked at now.
Research is now on the move and we should hopefully see more information emerging over the next year or so, with new avenues of thought opening up as this reveals other possibilities, along with new scanning and testing procedures such as fMRIs.
Until then, keep strong and believe, the reason WILL be found!
Thanks so much for adding So much to the information stream. Very much appreciated. I hope we dont have to wait too long to hear research results and possible treatments.
I find that PAIN of itself will cause my seizures to trigger. Therefore any illness, condition or procedure that causes me to feel pain will worsen my "FND" symptoms. Along with seizures I'll lose my ability to speak, become more sensitive to sound and light. Also many of us find that being ill with flu, colds, (female) periods, almost anything really that causes our bodies to "work" harder will bring on, or make worse, FND symptoms. The reason for this is unclear, but knowing it happens can help us get through that time.
Always good to mention ANY changes to your GP and consultant, especially when such a change is connected to medications as this can indicate other issues that may need investigating.
Thanks again. Really helpful. Unfortunately I dont have a Consultant. The Neurologist who gave me diagnosis does not give ongoing support to patients with FND. Is this a common problem?
Unfortunately yes, it is quite common. If you are in the UK and can access London or Edinburgh there are 2 consultants specializing in FND and quite a few more around the country who are FND aware and can provide support and therapy. There are also 3 Inpatient units available undertaking various investigations, therapies and rehabs. If you'd like to know more please do look at fndhope.org and maybe join the Facebook group connection there. We have over 2500 members around the world and now country specific groups to provide help and support more appropriate to individual needs.
I have FND and yes it does respond to antibiotics as well interestingly enough. I did have a series of infections before I became ill but I don't notice that infections now 4 years on make a difference but the antibiotics still do. I have found that vitamin D help with my nerve pain and stopped me falling over. The B vitamins help with the tingling in the hands. Diet plays a role. Hope this helps anyway.... my biggest problem is massive sleep disorder. I use a progesterone cream which helps called Menogest which has many herbal properties some of which I've tried independently which don't work. Have tried quite a lot.
Thanks so much for taking the time to respond. Very much appreciated.
What sort of sleep problems do you have?
I had major problems with leg jerks and frequent waking until i started on Gabapentin but now take biggest does at night and dont get any of the problems but still have to go to loo 3-5 tomes a night.
Hi I have a different problem in that respect in that I have something call total insomnia 4 days weeks months and years. The only thing that breaks the cycle after much prayer has been a complex collection of vitamins and the progesterone cream. It's been truly miserable I do have other symptoms as well but this for me is the worst. Glad you found something that helps as well. There is always hope. Without my faith in God I would not be here today I can tell you.
How strange! I was given antibiotics last year whilst in hospital for a suspected infection, I was on them for 3 days before the doctors took me off them as it wasn't what they first thought. But while I was taking them i noticed a big improvement in my fnd symptoms but thought it must have been a coincidence. I have often thought about this since and wondered if antibiotics really do help this. Now reading that others have noticed this too perhaps it isn't just a coincidence.
It is also possible that your body is reacting to the antibiotics as they stimulate our own natural defence to work harder and maybe this is boosting our own natural ability to correct imbalances and problems within our own bodies?
Autoimmune over responses such as in sepsis, where the immune system over responds to certain infections and begins to mistakenly attack your own body is quickly calmed by IV antibiotics while the original local source of infection ( often bacterial ) is cultured and specific antibiotics targeted as further treatment. Just had this treatment after a severe UTI which massively flared up all my old normally mild symptoms and even left me with a couple of new ones ! I'm a month on and improved a little but sadly not enough to get back to work yet - still some weird stuff/ major fatigue ongoing.
This might suggest that some problems are triggered by an abnormal immune response to infection and perhaps low grade ongoing inflammation ?
That's interesting reading. When my seizures started last month I had spent a few days feeling generally unwell and felt I was getting a coldsore/sty. I've suffered terribly with hayfever this summer so perhaps my immune system was so low this had something to do with the seizures starting...
Hi Mel, there's a number of threads that have noted they have been diagnosed with Lyme or tick bourne infections who've had a similar experience (response to antibiotics) I'm not saying you have lyme but if you can find a doctor that can test your blood it's worth looking into
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