Posting for traffic - Fibromyalgia pain

[deflatedbirthday]

I'm currently experiencing a really bad fibromyalgia flare. The pain in horrendous. Mainly my knees and wrists but travelling around my lower back, shoulders, and lower ribs (it feels very similar to shoulder wind after a laparoscopy if anyone has experienced that). My restless leg symptoms are out of control. I'm in tears every night.

It's definitely related to stress. I've had a very recent traumatic bereavement for which I've been off work (just fine back after 3 weeks off). I also lost out on a job interview that I really really wanted.

I digress.

I'm currently taking co-codamol 30/500 and Amitriptyline.

The co-codamol works fine in dampening the joint pain. Usually the Amitriptyline works wonders for the restless legs however the symptoms are starting earlier and earlier in the day.

I take 30-50 mg per night. I can take up to 70 mg as per my prescription. It does not make me overly sleepy.

I'm wondering whether to space my full Amitriptyline dose out throughout the day e.g 20 mg AM 20 mg lunchtime and 20 mg at night to see if I can get on top of the symptoms.

I am trying to get a GP appointment but I'm absolutely desperate to at least get on top of some aspect of this flare. I'm getting to be beside myself 😞

Look up the Curable app including success stories regarding fibromyalgia.

Is it definitely FM Op? Only because there's a huge overlap of symptoms between FM and MCAS. And MCAS can be managed with antihistamines and mast cell stabilisers which might improve things for you.

Could you try taking Fexofenadine which is available OTC and see if that alleviates any of the pain? My DD takes 180mg twice a day (12hrs apart) so you could take 2 of the OTC ones which are a lower dose at 120mg.

Here's an interesting paper and there's lots of similar research. https://www.mastcellaction.org/assets/2021/09/15/24a565da-26cf-48bd-928c-cebe1d0a83e0.pdf?v=1

The mast cells are also triggered by stress which might fit. Sorry to hear about the bereavement and losing out on the job.

@BonnesVacances that's an interesting point. In al honesty I don't know. I've recently been diagnosed with FND and that has flared up with migraines recently. I have olfactory hallucinations (which are either scented candle or cigarette smoke in nature) and that's been driving my to distraction too.

I will give the link a read.

I take antihistamines for allergies. I have oral allergy syndrome since childhood but I don't take anything strong unless I have a reaction.

The pain I can manage just about. The restless legs I cannot.

Thank you for replying. It's such a lonely place to be with chronic health issues. My DH is wonderful but he has no personal experience.

What are you doing to manage the stress?

I have Fibromyalgia bought on by PTSD and use a TENS machine for restless legs. It’s amazing. Alongside an electric heat blanket in the absolute hottest setting.

It’s no fun is it? Hope this helps.

@LeafHunter I've had three weeks off work for the bereavement. This flare seems to be delayed. I guess time will be key here. The mainstream has been around dealing with police and coroner.

*main stress

Have you tried a magnesium spray for the restless legs?

Sorry to hear about your bereavement. I hope you feel better soon.

My husband has recently been diagnosed with Fibromyalgia. In the first GP appointment where it was raised as a possibility, the doctor said that usual pain killers don’t really work for fibro pain and DH had found that to be the case. Fibro pain is considered most likely to be nerve pain, so that makes sense. He has been prescribed Pregabalin. It’s early days and he’s on a lowish dose, but it seems to have helped a bit. It may be increased at the 3-month-review. Given that you find the Co-Codomol helpful, perhaps @BonnesVacances is on to something wondering if your pain may be caused by something other than Fibro.

OP, my DD has ME, POTS and MCAS so I know how lonely life with a chronic illness is and just how shit it is when doctors tell you they can't (or won't) help. I also know that many many people in those communities are initially diagnosed with a bullshit FND diagnosis in the absence of anything else, so please take that diagnosis with a pinch of salt.

People with FND are put on a shelf to gather dust when in fact there can be things to help the other conditions, in particular POTS and MCAS and especially in the private health sector (NHS is pretty hit and miss).

When people experience FM-like pain and also mention allergies, it always makes me think of mast cell issues. If you think it resonates, you can contact the Mast Cell Action UK charity for names of doctors who can help depending on what specific symptoms you're experiencing, stating whether you want NHS or private. There's a very good FB group too which might help info-wise.

I also use the curable app to manage my fibro and chronic pain. It's been a real game changer for me

I have MS and take ropinerole for restless legs, it's wonderful. I take tramadol for nerve pain. I also avoid foods that cause inflammation; if I eat lots of sugary processed foods I'm in misery.