Fibromyalgia and FND.

[LEEJUNFAN]

Hi everyone,

How many of you have Fibromyalgia with your FND?

My wife who has FND, along with several other conditions, was diagnosed yesterday with Fibromyalgia.

She's been getting pain all over her body and extreme tiredness, which we thought was her FND, but had an idea it might have been Fibromyalgia.

The symptoms are similar, but the Consultant who was aware of FND, was very understanding.

What are your coping mechanisms with Fibromyalgia, and how do you deal with it, with your FND?

Does diet help?

Many thanks.

Tony and Kim

[M3rry]

I was diagnosed with fibromyalgia over two decades ago - FND last year.

Many of the coping mechanisms are very similar - pacing and acceptance will help you both the most. With fibromyalgia never do 'just a little more' (except in special circumstances like weddings), always aim to do 80-90% of what you think you can do and rest carefully.

For the pain it is a case of trial and error, you will both (you will see side effects your wife might not notice) have to assess which drugs work best - for me it is opiates as gabapentin affected me badly. My maintenance painkiller is brufen with the opiates for when the pain is too much. Try to see a pain consultant for the better range of drugs and delivery options (my husband has patches that last 72 hours).

Fibromyalgia is associated with gut problems - if your wife has digestive problems then you will need to work on this too. I would suggest doing this slowly, try one thing at a time and allow her gut to recover from each change before starting the next. For us we removed as much ammonia as possible (used in the UK to sterilise tap water and in many food additives) and we try to eat as much made from scratch food as possible.

Each trigger or over-exertion is capable of setting off any of the symptoms or even a new one. (I bet a lot of this sounds familiar.) The good news - people have heard of fibromyalgia and your wife will get much more empathy and consideration with this diagnosis.

[LEEJUNFAN in reply to M3rry]

Thank you so much for your reply.

Kim's not on any medication for it, aside from the Baclofen for FND,and the Consultant agreed that Baclofen tends to interact with most medication.

She does have IBS and we agree totally, in that FND and Fibromyalgia are very similar in their symptoms.

As you correctly advise, no processed food helps too, however, Kim does like sweets!

I'm phoning the UK Fibromyalgia line for more information.

Thank you so much for your advice.

Warmest of wishes always.

Tony and Kim

[shali_queen]

Greetings,

I had fibromyalgia develop after FND. The only thing I know that works (if it’s not too strong) is to simply press in the area it hurts and the pain disappears. Of course, there are instances where it’s stronger than normal and doesn’t help much, but it’s the only thing that has been helping me in that regard. Also, having enough sleep helps. When I don’t have enough sleep I have also noticed an increase in pain. So best solution is try to minimize things that can trigger it.

Take care,

— Shali

[Keepstrong in reply to shali_queen]

Hi Shali. I hope you don't mind me popping in on your post 🤗

I just want to let you know that your totally right about the sleep part. Fibromya flairs are always connected to lack of sleep, that in turn sets of the pain trigger points, that then leads to feeling of either motivation low energy or depression, that leads back to sleepless nights an till the circle is broken the ring continues. So definitely rest not sleep during the day, try be active, keep sleep only for night by even using soft music or guided meditation imagery from YouTube. Then during the day use mindfulness activity videos for people with disability conditions. I hate using the wording disability, but the videos will then only come up with activity an exercises that Dr's and physiotherapy therapist would recommend.

Getting out every day even if it's to the end the drive way or garden will help so much if you just take in the fresh air and observe noting only what's surrounding you. An take in lung breaths of breathing in only with your nose, an holding it for the count of 3 and slowly singing out all stail blocks of painful energy out through your parted lips with your jaw slightly dropped. To do this a few times will really help your energy levels and the muscles in your air ways. Thymus and your body. Then the circle be broken an your flair put under control.

Sorry again for popping in. I just thought you might like to hear your right about the sleep part. But as to pressing onto sore points, not a good idea for everyone as some have it more severe than others and it can actually cause more soreness than before and bruising that can actually lead to blood clothing. But how ever you can do very gentle pressure that is okay for you massages in upward possession an slightly rub down the area an massages upwards again to relax the pain trigger spot as irs called.

I do hope this is of help to you and everyone else. Wishing you a wonderful day an new week ahead. Comfort and light wishes. Keep strong and be well. Ce. 🙏😇🤗

[Hidden]

Hi,

Have you tried magnesium flakes in bath? If not, give it a go. Orally, try magnesium supplements, especially magnesium glycinate.

Best, G.

[Keepstrong]

Hi Tony 🤗🤗 I sent you private message here.

Yes diet big time helps. Especially if Kim keeps a diary of what food she may of had that makes her feel fatigued as fatigue can be sometimes worse then the actual pain. Also some foods can cause inflammation to anyone not just people with health problems like all of ours.

You an Kim can either go to a dietitian or you can simply research it yourself on the likes of Google or you tube. Type in diet for people with fibro myalgia syndrome / Myalgia Encephalitis. As it's very similar to fibro myalgia. And then do the same word search for diet foods for people with neurological functional disorder.

I hope you an Kim have a good day. Take care and chat on message soon when your both ready. Hugs and comfort. Ce. 😇😇😇😇🤗🤗🤗🤗🤗