Never seem to get better..FND is ruin... - Functional Neurol...

Functional Neurological Disorder - FND Hope

3,881 members2,102 posts

Never seem to get better..FND is ruining my life

Neo117
Neo117

7 months into treatment and still no signs of improvement, in fact I’m getting worse. When I read some posts I realise I’ve gotten off lightly in that only my walking has been affected. I don’t get seizures or anything like that so maybe I should be grateful but my life has been turned upside down and I’m struggling. I have severe back and hip pain when I try to walk to the point I don’t even want to try. Sometimes I wonder if I do have FND? I see a neuro physio but to be honest she doesn’t help. I’ve tried distraction techniques, tried to go faster or slower, I’ve tried to rest, reduce stress but nothing is helping. What else can I do? I want my life back, I want to be happy again and enjoy time with my family. Any advice would be great, my positivity is running out 😢

12 Replies
oldestnewest

Hi,

I'm sorry that your are struggling. I'm 5 years in and it's no fun. Pain grabs your attention and it's hard to ignore. The best things that I have used for pain are non steroidal anti-inflammatories, TENS is a god send and my latest favourite miracle worker that I tried in desperation for the searing pain across my shoulders is magnesium oil massaged into the area - I don't know how it works, but it does. This is said by some to increase your serum magnesium levels too, but there need to be more research.

As for things to try I'm afraid it's never simple. It's not like there's going to be one answer. Make sure you have had your B12 and vitamin D levels checked. GP's tend to report them as normal, but neurologists like them to be above 500 which is far higher than present norms, so ask for the actual figure. I don't absorb vitamins properly so I use oral sprays of both so it goes straight into my blood stream and I can be certain that I'm getting enough. Vitamin D is important as if it is lacking then it can cause pain, especially in joints. Hips being a prime spot.

Get some sun light. It helps form serotonin, vitamin D and regulate sleep. Even if you are not depressed it will help as serotonin is found in your body as well as your brain and can contribute to how much pain and stiffness you feel. Vitamin B6 can help with the formation of serotonin.

Get a good sleep pattern. This can make a great deal of difference. It's a major brain rhythm and will keep you balanced - it makes a huge difference to my symptoms. CBT is the most recommended way to solve sleep disturbances. Your GP can refer you if you are in the UK as it's available on the NHS.

Sort out any other conditions you have to an optimum level. Thyroid problems, migraines, anything you may suffer from.

There's a list on the FND website of supplements people have found helpful. Again there is no panacea.

It tends not to be an either/or condition. Multiple sticks need to be taken from the fire. It's not like the old "Fire triangle" where you remove one element and the fire goes out. It takes a co-ordinated tactic to lessen your symptoms. "Effort" is not the answer, you can't push through symptoms. It's like banging your head against a brick wall.

It's like there's an elephant in the corner that you've been told not to talk about - all of a sudden that's all you think about day and night. The best way I find to distract myself is to do mental arithmetic, either basic maths as fast as I can. There are number games on Facebook. I also like to challenge myself with harder stuff at the moment it's the Bletchley Park puzzle book. I have too much fatigue to do the physio so plain old distraction helps.

CBT can also help in general. What we expect from our illness can actually affect how we perceive it and the expectations start to become self fulfilling prophecies. We develop habits and a view of our illness without realising it. Mindfulness is recommended too. If nothing else it will help your sanity. So will detoxing your Facebook and friends in general too. I'm afraid tolerating folk who are not helping you or make you feel bad or mad are best out of your life.

Well that's all I can think of for now. I hope some of it helps. Some of it will already be familiar. It's just learning that you need to sort out everything. Maybe take on one new thing to tackle at time and build up.

I hope this helps. Even after five years I've made improvements to my symptoms. It's not the end, but I feel it's the beginning of the end. I hope you find your answers.

xx

Neo117
Neo117 in reply to thinkin

Thanks for your advice. It’s so tough and everyday is such a struggle. I’ll give everything you have suggested a go, I need to, if not for me but for my husband and my kids because they are struggling too. I want my life back but there are times I feel like staying in bed all day!!! I hope you continue to manage your symptoms and hopefully you’ll be free from this one day...hopefully we’ll all be free from it xxxx

thinkin
thinkin in reply to Neo117

Hi,

I know it seems daunting, just don't over do things. You can make yourself worse by doing too much and you're re-enforcing the FND pathways. We tend to be a stubborn bunch. We are high achievers. The type that keeps going under adverse conditions, but it's not good for your FND.

Hope you get yourself sorted out. I wish I'd had someone to spell it out for me right at the beginning. Instead I tried to keep going and paid for it dearly. xxx

Hi Neo117, the reply from "thinkin" is spot on, very good info, take heed and get well Neo117.

i have been working at it for 2 years

Awww I hear you there I'm on my 5th day of a bad run, I can't walk well either but I have my trusty frame and today I'm going on my scooter as my speech is a little better !

My advice to you is get to know the new you ! Concentrate on what you can do and not what you can't,

It took me 3 years to admit I needed a walking frame and I wish I'd got one sooner !

Then after 4 years I gave in to my embarrassment and pride and got a mobility scooter I still feel a bit humiliation of humiliation but i have my independence back when I'm coherent enough to ride it !

There is no miracle cure for us but you can't let it ruin your life you say only your mobility is effected ?? Then your lucky ! I can't walk half the time, my head is constantly spinning, my speech is effected, my joints hurt, headaches earache sickness fatigue the list for me is endless ! Were not dying we don't have cancer or liver disease there are people and children worse off than we are !

It makes you feel shit and useless but don't wallow in self pity enjoy the good days and except the bad xx

Hi, I'm 15 months in to my formal diagnosis but have suffered in some way or other since 2015. I've been unlucky in that I've suffered with some of the more negative or extreme symptoms, but I've fell lucky with a great neurologist, neuro-psychologist and community health team. The thing that I'm learning is that there is simply no quick fix and one thing that works for one person just simply wont for another. I find that exercising and mindfulness is slowly helping. It isn't fixing things over night but any progress is progress. The exercise and mindfulness is tough, but you've got to keep the faith, keep working hard and try not to give up. That's tough I know, especially when you've been fitting all night, are tired or are in pain. This is a long road, but think of your family and the thought of that can be your focus and motivation. It is mine. Please try stick with it and I wish you all the best. Dave.

I got a lot worse before I got better and it was around my first seven months dealing with this that was the hardest for me, physically and emotionally. I’m a single mom with two kids, and I was lucky enough to have an amazing boyfriend who I moved in with, because I couldn’t work or drive and I was by all means broke. I wasn’t getting great healthcare and I live in a rural place so it was tough and every doctor I went to told me I had a different problem and gave me drugs, which I’m naturally opposed to, but I tried a couple without success. October of last year I was having three seizures a day and I was truly miserable, I could barely walk, I was nauseated, had really bad short term memory loss. I felt so guilty, my kids needed me and I could barely take care of myself. I’ve talked about this a lot on this forum because of the impact it’s had on my health: in November I started taking THC/CBD oil and started the ketogenic diet. There was a lot of trial and error with dosage and getting into ketosis. But my seizures slowed down significantly along with tremors, fatigue and nausea. I was able to start running and cycling and swimming again. I did my first triathlon in June! So I want you to know there is hope. Now understand that I’m not completely cured, I still have bad days and the left side of my body still gives me trouble but I haven’t had a seizure in two months! I am working and driving again, and most importantly I feel available to my partner and my kids. This last week I have definitely been struggling with some symptoms but looking back on my journey I see that I’ve improved and if I can, you can too. Hang in there, and never ever give up. Their are lots of options of natural remedies out there, check them out and see if they can work for you! Big hugs

Keep the positivity up; believing that you can get better is important. The free Woebot app might help with positivity. I recommend that you use the book Overcoming Functional Neurological Symptoms, A Five Areas Approach. I have made it to page 171 of 296 in the book. Each page is easy to read with lots of white space. If you can read e-mail and web posting each day, you can read 3 pages of this book per day. My FND symptoms have lessened while reading it. Also, watching "My 600-lb Life" gave me a few days of remission.

Chingona
Chingona in reply to pickleweed

I love my six 600-pound life show, are you serious or joking about how it helped you?

pickleweed
pickleweed in reply to Chingona

I am serious. One afternoon I was watching an episode with a 500-lb woman who was not losing weight after her gastric bypass surgery (I wish I remembered her name). Her surgeon complained that this woman did not get psychotherapy. The woman said stuff implying that she had done everything possible to lose weight, which obviously was not the case. Their conversation made me think, "That's me. I'm like that woman. I thought that psychotherapy was useless (so I'm not going often) and that I had done everything possible to get better (when I hadn't)," and then a flood of guilt passed over me, and immediately 85%-90% of my FND symptoms went away. The FND symptoms stayed away for almost 7 days, and then came back hard for a few days, and then they went away again for 5 days, and then they came back strong for 1 day, and now my symptoms have been in 85% remission for about 5 days. During the relapses and remissions, I have also been reading the book Overcoming Functional Neurological Symptoms, A Five Areas Approach.

Chingona
Chingona in reply to pickleweed

That’s interesting

Hi again ! Some great tips here for you to try. Just wondering if you’ve managed to try floating and walking or just bending your knees in a pool yet ?

You may also like...