Feeling lost

[Rob186]

My girlfriend last April had a very bad fnd attack, losing the ability to walk, speech and memory, non epileptic seizures. Doctor suggested tms which thankfully worked. She started driving and working also reducing medication. Last Monday she had another attack to the point of forgetting that she was working and spasms and difficulty walking. Does it ever get better? We both feel lost. It's like she can never have a so called normal life. When things were getting better for her this happens again.

[Sugartime]

Has April been diagnosed as having FND

[Rob186 in reply to Sugartime]

Yes, but where we live there is not much knowledge about this illnesd

[Sugartime in reply to Rob186]

Hi Rob the best way to describe FND is the body and brain are out of connection, it is very debilitating and causes chronic fatigue, the symptoms are

ever changing we found helpful to get your vitamin B checked we are in NZ where are you located

[Rob186 in reply to Sugartime]

Malta, she takes vitamin b6 and evening primrose oil regularly

[Sugartime in reply to Rob186]

Does she suffer from anxiety

[Rob186 in reply to Sugartime]

Yes and depression, medication was reduced as she was much better, so it's a matter of maybe was too soon...

[Sugartime in reply to Rob186]

That’s the odd thing about this illness it comes and goes, no reason or cure.

We are currently working with a chiropractor to relieve the tension and open up the neurol pathways

[Rob186 in reply to Sugartime]

Yes that is the problem with this illness and the lack of knowledge. Some doctors just prescribe pills that more often do more harm than help. Will suggest this to my girlfriend and give it a try. Thanks so much for hearing me out. Take care and stay safe

[Cmb3210 in reply to Rob186]

100 percent correct.Pills do more harm... Most likely shes better without them..pills are like a bandaid just covering up a problem that eventually just gets ripped off n exposes the problem again...

[Rob186 in reply to Cmb3210]

Yes in fact we are trying to reduce the pills but since she has been on them for a long time we need to do it slowly...

[AjaStar in reply to Sugartime]

Has the chiropractor helped

[Keeponfighting in reply to Rob186]

Rob I take multi-vitamins that contains all the Bs, I take vitamin B complex, I take CoQ10, and I just ordered extra B12 so my nerves remains healthy. The CoQ10 is very good as it helps a person from feeling detached from your body, the B12 gives you extra strength. I have started working and I leaned that for me to lead my life as normal as possible I have to adjust what I often perceived as normal. My new normal is to manage the symptoms on my own cause medical professionals won’t do it cause they haven’t got a clue in how to help people with FND. All the best for your girlfriend.

[AjaStar]

She has YOU and let me tell you that is the best treatment for her. You believe her and you help her and even reach out online on her behalf. I wish my husband was that supportive. Most people think we exaggerate our symptoms cause surely after all the doctors and tests you’ve done they would have found something by now. This disorder has no rhyme or reason. One week I can hardly walk and slur my words and then all of a sudden I can walk a mile. And even when I can walk doesn’t mean I’m ok...I still feel a whole bunch of other symptoms but it’s just not debilitating at this moment but the next moment it can come crashing down. I can be happy or sad, physical or just laying down. It doesn’t matter, it happens off and on again and again. It’s very scary frustrating demoralizing but not much we can do. I’ve tried different therapies and vitamins and I’m still the same after two years. Others have been through it over 10 years. You just have to always be ready and have a plan in place when the Relapse hits. Make sure you have all the aids she needs. I have my cane, a wheelchair. I needed the wheelchair a few times but thankfully was able to walk again pretty quickly and I haven’t used it for a year but it’s there in case I need it. It sucks but what are you gonna do, it is what it is, just support her. She’s lucky to have you. Good luck

[Keeponfighting in reply to AjaStar]

You are right and as a person with FND I completely know what you are talking about. This illness is very silence and at times you feel so alone cause you really wish someone understoods or felt what is happening inside of you. At times you want to explain what is happening in the inside of you but you are unable to explain cause you don’t know what are you are feeling. I have been with this since I was 10 but it got really debilitating in 2010. Thought I am qualified social worker I’ve been unable to work since 2009. My condition has now improved and I will return to work tomorrow for the first time. I no longer take pregabalim but I take multi vitamins , vitamin B12 and I just bought vitamin b complex to help beat fatigue. I do worry how I will cope with work and this condition but I have to try otherwise if I wait to fully recover It might take a while before I return to work. For me the tremors, the feeling of dissociation, and the weekness are the worse symptoms ever. I Hate it!!!

[AjaStar in reply to Keeponfighting]

I totally feel you. I hate it too! And it is hard to explain how you feel and when you try, it sounds unbelieving and erratical to myself imagine your family and doctors. This forum validates me. I am happy for you that you are going back to work. We have to try to move on with our life after all, just take it one day at a time. I miss driving so much, that freedom. I have to rely on others for a ride but I am going to drive one day again...that is one of my goals. Good luck to you.

[Keeponfighting in reply to AjaStar]

Thanks for your encouraging words,. I do have a very supportive family who believe me and help but I had friends that have doubted me and implied that I was making up the symptoms. Thank you for your well wishes regarding my work I am actually excited that after 10 years I will be in payed work but terrified that this condition will make my life very difficult during work. I bought vitamins and take all types of vitamin B to help with extras strength. Why did you stop driving ? Did your ability to walk decreased? I never stopped driving and never notified DVLA of this condition since my tests are always normal. But I never really had major incident while driving. There has been times where I struggled to move my left leg or arm but thanks be to God no accidents happened because I had people in my car to help. That is the spirit keep always possitive you will drive one day. Thanks for the kindness. Keep hopeful

[Rob186 in reply to Keeponfighting]

Good luck on your job, try to focus on Happy thoughts, and breath... That is what I tell my girlfriend and it helps

[Keeponfighting in reply to Rob186]

Yes absolutely Rob we must keep positive thoughts otherwise we make ourselves worse. Tell your girlfriend she isn’t alone in this she can always come to chat with people like her in here who understands what she goes through. Thanks for the well wishes. God bless

[GentleFlower in reply to AjaStar]

Hi AjaStar I agree with Keeponfighting I drive too but I reached out to the UK mobility Scheme once I had my PIP and ESA rolling which I hope @keeponfighting has too. This helped me to get an adapted car. You do not have to tell DVLA anything where the tests are just normal exactly as it would mess up a lot of things I think. I have non epileptic seizures and tremors and mobility difficulties with legs and body but I know when the tremors are coming on and also have not happened whilst driving because I only drive when I can actually walk using crutches and feel well enough to concentrate and focus.

I might go 3 months not driving due to the fluctuation and worsening of symptoms at a time but generally during the remission periods driving is my life line to go out see and meet with friends and family. So you should consider getting help from Mobility scheme.

Love and Light GentleFlower

[Cmb3210 in reply to AjaStar]

What Ajastar said is right..it's good she has u..u reaching out online shows u care...hope u u are doing well Ajastar...i haven't Spoke to u in awhile..i was just looking back at messages i had with u..hope your good

[AjaStar in reply to Cmb3210]

Hi! I’m ok..still have my daily symptoms though that always fluctuate. I’m still here. How are you? Have you been well these past few months?

[1952blonde in reply to AjaStar]

I agree with you fully. The lack of understanding that one day I can do stuff and the next day I can’t. It leaves me feeling totally alone. I just keep trying to achieve the most that I can each day without giving myself too much pressure.

Rob186’s girlfriend is fortunate to have such an understanding person fighting her corner.

I wish everyone relief from this horrible thing soon!

[Paddoodlz]

I have had this for the past 5 years. The symptoms came on gradually and then 2 years ago landed in hospital an things went downhill from there. My advice is you have to get used to the "new normal". Everyday base any activity you may do on your energy for that day. If you are going to have visitors know that she will have to have a nap prior to and after the visit as it is exhausting. Also, set a goal or two for each day based on that energy. For example, make the bed or maybe it is even get out of bed for a goal. Have a bath and wash hair. By setting small attainable goals for that day it gives a sense of accomplishment. Sometimes energy will be there but you have to resist the want/need to do things. My hubby will tell you I am horrible at that one. I alwyas want to do things and then I am sorry later that day or the next.

I too cant speak. At first it was gradual going to stuttering, then wako words, then giberish which is where I am most of the time. Most days i have trouble typaing but today is a good day so wanted to respond to you. If you can get her to see a speech pathologist they can also whelp with swallowing issues. Chiro (the activator method) helps with relieving some symptoms- helps with movement and physio will provide exercieses to do at home. Just remember any bit of movement we do is exercise so no longer think fo the no pain no gain mode.

I hope this helps! She is lucky she has you to believe in her. I know it is difficult. I tell my hubby that he has to go out and do his own thing as well - get out of the house and not to worry about me so if you are able I would suggest that too. Stay strong and stay safe. The group is here for you.

[Rob186 in reply to Paddoodlz]

Thanks so much, she seems to be better, memory is still foggy... We have appointment with a neurologist tomorrow and see what he will come up with... Wish you good health

[Sugartime in reply to Rob186]

Please post what the Neurologist says all the best

[Paddoodlz in reply to Rob186]

Let us know what happens with Neurologist please. Hope she has a better day

[Rob186 in reply to Paddoodlz]

Will do, I have a feeling that she would need to do more tests, psychiatric doctor ordered more tms but not convinced it is the right approach, it worked for a while and she is back sick, and we don't know if it cause more harm

[Rob186 in reply to Paddoodlz]

Just back from neurologist, and advised neuropsychologist as what is happening to her is all of the trauma she suffered, suggested yoga which we will start tonight... Now it's a matter of time and hope

[Rob186]

I wish you luck, maybe I feel more as I happen to be a girl not a man. One word of advice, try to change the mind set, I know its hard to do so. Try to find activities that make you feel good, I suggested to my girlfriend to start drawing, we do yoga, swim and go for a walk. Have you tried TMS? It helped her alot, it's not invasive and very little side effects. We might try and do some more. Please don't give up on life. Take care

[Pottsy1]

I have the greatest sympathy with all of you. I care for a gentleman who has severe and multiple debilitating symptoms. The only diagnoses is FND. He has seen numerous specialists and had input from a Medically Unexplained Service, a neuropsychologist and various other specialities with no improvement. It’s frustrating that nothing seems to help and people are just left.

It does however worry me that people are suffering serious symptoms and seizures yet continue to drive. We were told we must stop driving and report his illness to the DVLA even though all tests were negative. Given the unpredictable onset and varying severity of debility it may prove catastrophic to be behind the wheel of a car should an episode start. I’m truly not having a go at anyone but would urge caution and ASK the doctors if you should be driving.