How are you dealing with relapse situ... - Functional Neurol...
How are you dealing with relapse situations. Day to day life, work, understading all this and coping? Frustrated patient!
Hej Kimba
Its really hard trying to understand whats happening and very frustrating. I try to just accept what happens from day to day. I am soon to be 42, been married for 17 years and have 3 wonderful boys, 9, 7 and 4 years of age.
My symptoms started just over a year ago with tingling, pins and needles, numbness feeling in my right thigh and over my lower back this has been there since pregnancy) If anyone touched me in these places it made me feel physically sick and the same with driving,having my heal on the floor of the car was excrutiating..
Then this feeling started to spread down my right leg and my right arm and I'd become quite forgetful.. I'd made an appointment for the doctor but before I got there I was submitted to hospital. I'd been shopping with a friend and started to limp and my right hand side of my body started to droop. The tingling feeling was all the way up my right hand side. it was like someone had drawn a line, its still there some days worse than others. I was sent home after one week, they gave me an MR scan, blod tests, eye test and a lumba puncture (which was positiv, but they say only marginally). I was sent home and told I should take it easy that they couldn't find anything and maybe it was stress related they didn't know but I shouldn't come back unless anything else happened. Though it would be a good idea to cut down on activities. I was still limping badly, couldn't walk properly on my right foot and sometimes couldn't get may hand to do what I want.
So the next 3 months had acupunctur which helped and I put myself through a mindfulness couse, which I've found very helpful, it helps me accept how my body feels and acknowledge the pain/discomfort without it overtaking every minute of my day. I've also found the breathing techniques helpful. Although I still have take pain killers when its really bad. Stopped teaching gymnastics, took myself out of various committees and just tried to focus on getting better and getting back to work.
I have my own company where we help the elderly of infirmed with their dayly needs and cleaning. I love my job, but have found that cleaning is a real problem. I'd have a week or so where my symptoms would get better and then get worse again. I started to see a pattern that before i have an attack where I have problems walking or using my right hand I get very tired. I have started a symptoms diary(Dr Stone thinks is a good idea) so I can see if there are certain circumstances/situations that may make things worse or better.
At the end of August last year I was starting to feel much better still had the tingling on my right hand side but could cope with that and had started working 10 hours a week, then I started getting tired again, sleept more or less the whole time, then I started to droop again and my right leg started trail behind me. So once more I went back into hosipital, (my doctor told me they suspected MS) had a new scan and they checked that the nerves weren't damaged, They still couldn't find anything and decided that it wasn't MS but a functional paraylsis (weakness) on my right hand side. Nothing they could do, it was a malfunction from by brain to my body, they orgainised rehabilitation physiotherapy (started 2 months after I got home) otherwise I just had to get on with it and hope it went away, seeing as I had had some days where i didn't limp so hopefully it should disappear altogher.
My life is very different today, most days I wake up with a headache and pain in my right hand side, so nights even though Im exhausted I just cant sleep. i take saroten which is a antidepressent that has a relaxing effect on muscles when Im in a lot of pain/discomfort at night. I'm still working 10 hours a week however, I find if I push myself to do a lot of physical work then my body says STOP. I've learning how to understand and listen to the signals my body sends me when i do to much and I try to stop and rest although thats not always possible especially with 3 boys. Every seks weeks or so i have a week where I don't work I just recoupperate, I thank God I have my own business because that wouldn't be possible otherwise. When my husbunds is abroad working I cut my hours back, because the extra jobs of getting the boys op and driving the them to school, lunch boxes ect wears me out. When he comes home I usually sleep quite a lot the first few days. My boys are also starting to recognise when I'm getting tired and not so good, this week my husband is in China, so Óscar and Thomas my two oldest boys have made their own lunches this week and emptied the dishwasher even Jonas hás offered to help. Bless them. What has been hard is that when I'm tired I have a very short fuse, tend to say that "monster mum" is out today so no pushing me to the limit. Counting to 10... well sometimes 100 helps!!!!
I still go to rehab. physio which is good, hard work but for me doesn't seem to have any major benefit on my physical ability as one week I can do everything and the next I start from scratch. In the start it used to get me upset that I couldn't always do the exercises or that my leg/arm wouldn't do what I want, but honestly that doesn't help me. it doesn't take the symtoms away it just makes me feel down and frustrated. I don't like that because I'm a positive person for the most part, but I do have my down days like everyoine else you should read the last message I wrote, that was a bad day!.
So my advice is accept how you feel from day to day, on the good days enjoy all that you can but don't overdo it, so maybe they might just las a little longer and on the bad days find the small things that make you smile. Don't give up and keep pushing through. I decided to do everything the doctors, neurologist, psykiatrist say and hope that at some point I will get completely better and if not, well I have a loving supporting family, a lovely home, three great kids, my faith and strength of mind to keeping going and links like this. So No matter what the circumstances I WONT GIVE UP and Dont you give up either, your life isn't over its just different from how it used to be, so today is the start of a new day with FND, be positive and keep smiling.
Hi, I do not have relapses, since I have steady gradual worsening from year to year. My approach is being very practical about my future. I always try to imagine beforehand what I will need to sustain my life, keep going to work and do what is needed for my family when I become even weaker. So, nothing comes to me all of a sudden. I knew that at some point I would need a walker for longer distances, so I looked through the catalogues and found the most suitable model. When the day came, I simply bought it and started using it. Now I know that in a while (maybe in several months) I will possibly have to use crutches, too - so I am now thinking about my future life with them, going to work and so on. It does not feel a tragedy when you face it prepared.
hi i have had this condition since 2010 had mri said it fine but then i lost speech and walk with gait and as for dizzy spells it terrible since then had physio and speech therapy theyt really good but still i seem have really bad days and go up and down i no longer work as have tremors and am not safe by self so my partner now my full time carer.
i seem have increase my gabapentin for burning in head which noone else be able say why get that and am sensitive to sunlight and when dark car lights.
i try keep go even when so depressed i no want and want huddle and cry but i jusdt want know if anyone else same me or they have different experience.
I wasn't dealing with day to day life at all. My FND seemed to worsen gradually over the years with relapses every so often becoming more frequent with each one. I thought I had accepted this but I was wrong. My motto which got me through my previous life was "I will do it if it kills me".
I was un-employable for a full time job as if I needed to stop I had to stop. So with my own business for nearly 20 years after each relapse I would fight as hard as I could to get back on my feet and work again. Yes I managed to achieve my dreams in that time but that meant there was very little time for fun as it was either work or tired & poorly. Last year I had a really bad relapse and my FND seems to have doubled its rate of progression, I struggled at work and in the end had to face the decision to sell the business as I simply could not see myself being able to cope with a business and an illness which was affecting me physically and mentally.
After nearly a year since I have sought help for my mental health and given my body the rest it needs life is very different, I am having to accept what is wrong with me as I have no energy to fight it and that wasn't working anyway. Since I have been off work my relationship with my family has been better and I have realised how much I had given up in pursuit of "being normal" and having a sucessfull career and I am learning to accept that there have been good things to come from my downfall such as time to spend with my family. I still get extremely frustrated but I know I have lots more work to do to accept it.
For all those reading this I hope everyone can take 1 positive thing at least from this and hopefully get any help you need sooner and learn to cope with it. There is no shame in asking for help and you will find once you get help it will be the best thing you have ever done - you are not giving up - you are being pro-active and you will be surprised how many new doors will open to you. Yes you cant get your physical health back but there is more to life than that and the sooner you look for the positives the better. Please don't leave it 37 years like I did!
I've been using the forum over at mssociety.org.uk for well over a year (I can never remember dates!) as I suspected MS. There are quite a few people over there in limbo and a few mention FND. My MRI scan came back 'within normal limits' so I've been given an FND diagnosis and discharged back to my GP who I'm due to see in about two weeks.
Spookydookyspider - it's interesting that you use the word 'relapse'. I find that my symptoms vary, I worry about getting worse. I can still walk (even jog a bit) the school run (a mile each way ; I don't drive). However, I get moments of muscle weakness that make me think I'll trip but they go away quickly.
I've had a burst of energy recently - work is fun and inspiring at the moment - but I do notice peaks and troughs. Often, I'm more unwell at the weekends, to my hubby's dismay. I need recovery time to get through the week!
I'm a bit random this morning....I was just reading the neurosymptoms site and finally found something that may answer a question. I never had regular periods. They were often very painful. After a wonderful pregnancy, I had difficulties in labour which led to an emergency c-section. My womb was contracting too fast and too weakly. Almost 48 hours after the birth (a beautiful healthy girl!) I haemorraged.My womb failed to contract. A hysterectomy saved my life. Apparently, if there is a history of gynaecological trouble, an FND diagnosis 'may not be a complete coincidence'. After 5 years of not knowing why it happened, that is as close to an answer as I've received.
One last thing (though I've asked before) would I be entitled to any form of disability benefit? This does interfere with my work, I am discouraged and reluctant to seek even a part time job because I feel that I would be 'unreliable'. I'm happy being my own boss but my income is currently very low because of my health. Believe me, on good days, I work hard! I'm in a Catch 22 situation also - low funds mean little or no advertising mean no customers/clients! I rely on word of mouth, internet networking and manage two or three craft fairs per year (I have an Etsy shop for my handmade items and also run a Reiki (holistic therapy) practice.
I feel financially stuck. Healthwise, I'm doing all I can at the moment to help myself and accept help from others.
