Swelling with FND?

[AjaStar]

I sometimes have facial swelling. My legs and feet also swells. Right now my tongue is a little swollen feels a little bit bigger in my mouth. I’ve been to rheumatologist of course the tests are normal and I’ve been to allergist and nothing going on there either. So is this part of FND? Are any of you experiencing swelling?

[AjaStar]

Yes my muscles are very tight and I’m feeling it mostly on my neck shoulders cheeks and jaw. Face is swollen. So would a massage help me then? Thanks for replying

[Hidden]

Just to say that rheumatology and neurology are both specialisms where the conditions falling under these headings aren’t black and white in the way they are with say, Diabetes or Cancer.

So there aren’t tests any rheumatologist can use to exclude a rheumatic disease 100%. For example 25-30% of people with Rheumatoid Arthritis and Sjögren’s will have negative blood work so alternative methods of testing need to be used. These would be ultrasound of joints, x-rays and for Sjögren’s a lip biopsy of minor salivary glands. You would probably know if you’d had either of these done.

So rheumatologists can be wrong in their diagnostics and so can neurologists. Second or even third opinions can be completely different to the earlier ones.

Or you might possibly have an endocrine disease or something very rare.

Personally I wouldn’t say swelling is normal or assume that one specialist is correct because of the tests they run. There are other conditions that can cause swelling or bloating and FND isn’t yet diagnosed on clinical evidence but rather it is a diagnosis of exclusion. Nor should it always be assumed to be the cause of every symptom that comes your way following a diagnosis.

In fact the symptom list for FND is so inclusive that almost all symptoms outlined might equally apply to any condition at all.

[AjaStar in reply to Hidden]

I have been to many specialists over the last few years and they cannot explain it so it just might be a part of FND, that’s why I’m asking you guys your experiences. It helps to know that you are not the only one who is bombarded with so many symptoms that it’s like torture. You tend to handle new symptoms better when u read about other people’s symptoms with FND.

[Hidden in reply to AjaStar]

Well I can say what I say quite confidently having been misdiagnosed with various major things over a lifetime -probably including FND.

Many of us with Sjögren’s, Lupus and Vasculitis can take many years to be diagnosed - someone on the Lupus UK site recently reported diagnosis of Lupus after 30 years of seeing many specialists for example!

On the Lupus UK community and others I use relating to the host charities, no one is allowed to give out medical advice and if someone reports concerning symptoms then they would be advised to go to their doctor rather than assume Lupus or a related condition is necessarily responsible. I feel the same rules should apply here for what is it isn’t FND related.

[AjaStar]

Complicated and no definitive treatment the story of our lives with this stupid FND. I’m just trying to ride this out until it lessens in which a different symptom will then start to roar its ugly head. Sorry to be moody but my head really hurts. Tylenol doesn’t do a damn thing.

[AjaStar]

Lol thanks for making me smile 😊

[Momofson]

I would never accept a diagnosis like FND for facial swelling or and kind of swelling! You need to FIND a new doctor! Whit many doctors now If they can’t find something, they call it FND. Go somewhere that you can get real answers!

[brightnhopeful]

This is my second time around with FND. The first was 12 months ago and I thought I was having a stroke or Parkinson's. They took me from driving and I was off work for 7 weeks. Now this time it's different. I'm in more pain and experience swelling mostly on my right side which is my dominant side.its harder to walk and just do day to day things. I'm a mother of 1-10yrold- and it's soooo difficult to be in good spirits. Im hurting or having difficulty walking regularly. I've talked to my doctor-psycholohiat-who thinks I should just push through it. She still had me working and I would struggle daily to get up and out. She constantly says the swelling has nothing to do with the FND. But the swelling triggers spasms or just has me in the most irritating pain. I've asked for pain medicine and she prefers I not take anything more than otc. They don't work anymore. I'm glad I found this group because my family doesn't really get it. They try. My lack of normal mobility keeps me in a depressing mood. I'm now off work again and even my job thought it was a joke. Where I live doesn't have support groups for sufferers of FND moreso adults with responsibilities. My doctor says she can't start one either. Sorry for the long post but I just am really fustrated with this and wondering how long after I get over this episode before it will happen again and how long will that time last.

Career wise how does everyone do it? Not knowing when, how bad, or how long the episodes will be.

[Marnz]

Wow yes I couldn’t figure out what had caused huge swelling in my face to the point it looks like another chin and my hands and legs some days it’s incredible other days not to bad but I never thought to join the dots!!

[_Boom]

Hi ajastar...yes i get swelling and now im getting tiny bits of food going down my wind pipe hole and getting stuck causing more irritation as i swallow. ..my back story is going to several neurologists sinse 1998 when all this started...first i was told i had chronic fatigue..possible sgrojens..possible lupus and fibromyalgia for sure...i was told there was nothing to help CBT and physio..and medication to ease muscles..tightning tendons..and fatigue. I was told not to worry as it was not progressive. Since then after having a string of medication and side affects five been re refered as pain and symtoms esculated and got worse...i got diagnosed with ibs...disc degeneration...then hypermobility..depression...and now fnd...all of which i have been told by the nuerologist have different names yet more or less the same treatments...physio..tablets..and CBT therapy. I have experienced all with little relief...and now i just feel im being passed from pillar to post with no real investigations or concerns investigate the cause which really worries me...and many plasters for the many symptoms.

I have not given up complete hope though...ive now been on natural alternative meds/ therapies..which have given me more relief than anything...my main one is wellmans max vitamins...which consist of multi vitamins oils and other essentials the body needs...turmeric, apple cidre vinegar with the mother in it..from boots chemist or tesco or the health store..holland and barrett.. they seems to fight of bad bacterial infections...if you are on any blood thinners from your gp you need to approach these with care...i weaned of one to go on the other...i also use manuka honey 100+ which soothes and heals... i use a tspn of bicarbonate of soda without caking agent..in water in the morning to oxygenate my body...disease cannot live in a well oxygenated body...i also make a nasal wash with it which i can also use for an eyewash using the bicarb and sea salt and bottled clean water..i started with a 1/4 tspn of each to start with till i got used to it..then added more as i found that too weak as i got used to it..you will find what suites you..its soothes my eyes and cleans my nasal and helps my throat. I have found a lot of these through doing research over the twenty odd years off suffering.. but before trying look up and check to see if they are right for you or if they can interfere with the medication you may already be on from your gp. You can get information from google and pinterest app if you wish to. I hope this helps or brings you some kind of relief.

[AjaStar in reply to _Boom]

Thank you for your response. It bothers me too, that these doctors figure that since nothing is structurally damaged that they don’t need to investigate the cause or reason behind this disorder. I am not taking any medication at present because I’m scared of side effects. And from other people’s experiences it doesn’t seem to help with FND. I only take Tylenol sometimes which doesn’t help much but it is gentle and offers little relief when I have a headache which is everyday. Nothing seems to help the swelling.

[thinkin]

Hi,

I used to get swelling, but I do take supplements to combat my FND, and help my body cope with sulfite. Which it turns out, I'm really, really intolerant. Now I only do my funny walk when I accidentally poison myself. The swelling went down, but I can't pin point which particular one did it, or if it was the combination. Or it may be that I'm more mobile now. I know swelling and discolouration is part of chronic regional pain syndrome - See FND Hope website.

My tongue was a little swollen, but as I have problems with B6 - which links with my sulfite intolerance it was likely to be that. I have to have B6 as P5P and take bioactive vitamins as my body can use them more easily and they help "mop up" sulfites and help absorb the B6 in my diet.

We are a bit the same and a bit different. You need to do some research if you have other illnesses, or on medications. See if there are any supplements that might help each one. It's like trying to undo a gordian knot.

I stick to bioactive forms of vitamins if I can. After all if you are eating a normal diet you shouldn't, on paper, be insufficient of anything. Yet research shows that many in the west are nutrient deficient, if not frank deficiency, then at least have insufficient. So I tend to choose bioactive vitamins as they are readily available and mop up unconverted vitamins that could be neurotoxic. Also vitamins can be used in therapeutic doses ie. B2 for migraine.

But it's not just supplements. I know now that sulfites are my main "driver", but I've still got benefit from much of the advice on the FND website and things I've found out about my other health concerns.

You can have sensitivity to things without actually it being an allergy too. There are no tests for that. Except perhaps an exclusion diet. They are done under medical supervision.

It may seem self indulgent, but if anything we've found out for ourselves helps just one person then it seems worth while. You are not alone. x

[AjaStar in reply to thinkin]

I haven’t heard the term sulfite or bioactive vitamins. Thanks for introducing them to this post. We learn something new everyday. I’m just taking b12 but I’ll add the b2 for the headaches.

[thinkin in reply to AjaStar]

Hi,

I found bioactive vitamins when I was on ordinary B6 but I was still struggling - I was wondering how I could be still short taking 500mg a day, then I found P5P. It made so much difference but I had to then add magnesium to stop me stiffening as P5P pushes it into cells. If you do some googling there's research out there. There's a website b12-vitamin.com that has a great deal on B12.

Sulfites or sulphites are added to many things, but if they are used in weaker concentrations they don't put them on the labels. Mostly a problem for asthmatics (about 10%). I have to stick to organic. Good news is they are not allowed on fresh fruit and veg - they tried in the US but there were deaths. Oh joy! B12 helps get rid of them.

Happy hunting. There may be a series of answers, but you can improve. It's just fighting in the right way. It took me a long time to stop pushing myself.

Good luck x