New to group. Fibromyalgia support

[Sheefy123]

Hi, everyone. I have recently been told from my GP and physiotherapist that I have fibromyalgia. After suffering with anxiety, depression, sleep disorders, ibs, bad memory(forget things quickly and struggle to remember the simplest of things) and back pain for over 10 years. I had never heard of fibromyalgia until I found out about it myself through my own research. After i mentioned this to my doctor as my pains were getting worse he agreed that all the symptoms are typically of fibro. Over the last year or so I have wide set pain from my lower back upwards. Neck, back, arms, shoulders. And especially the tops of arms. The pain can move daily and is getting worse by the day. I am now seeking help from a physiotherapist and have exercises that I do at home. Trying to get to the gym is a struggle because of the pain and restless nights! Recently I have been experiencing alot of pain in my upper half as if i have trap nerves? Any information on coping strategies, medications and any advice would be much appreciated. I am currently taking codeine, paracetamol, and asprin but the pain is still pretty strong. I can't take naproxen or ibuprofen. I'm a 30 year old man. Any help would be much appreciated. Thanks.

[Midori]

Sorry you have had to join the club nobody wants to be a member of.

Fibro hits us differently, there are multiple combinations of symptoms. Mine is mainly below the waist, although there are also arthritic changes in my hands and wrists. Along with the Fibro itself, I also have IBS, reflux, Eye problems, fatigue, fibrofog and more, but still.

One of the most annoying things for me is my broken thermostat. I prefer heat, but too much, and I wilt. Cold makes me torpid, so I'm only comfortable in a very narrow temperature band.

I can't afford a gym, and I find it boring anyway, would much prefer to go for a walk. I use a rollator, although I have a wheelchair lurking in the cupboard. I try only to use that if I'm going to be out for a long period.

Pain wise, It is under control. I use Ibuprofen in the main, and for breakthough pain I keep a few Co-Dydramol on hand. I rarely use them so my prescription has lasted 2 years at least.

I take an unusual tack with my Fibro. I get angry with it, It is my enemy. I used to be a very active and sporty person, but it has all been stolen by Fibro, so I'm making sure I fight to keep what I can still manage to do.

Hope this helps a little.

Cheers, Midori

[Backbracelady]

Hi Sheefy123

I hear your frustration and pain, I'm in exactly the same situation, also 30 and living with this immense pain constantly, I have mobility problems too, I can't take ibuprofen or any antiinflamatory medication!! The restless nights are hard.. I usually just get up, sit in a comfy chair with heat patches and hot water bottle, make a nice hot drink and listen to music... trying to stay in bed makes me stressed and the pain worse, so now I just embrace the sleepless nights and rest instead.

Medication wise I take tramadol... which is much better for me than codeine ( tramadol and paracetamol combo is good.)

I also take pregabalin... this is a neuro drug that can help with fibro sufferers.

I take amitriptyline and clonazepam at night to try and help me sleep. Which works if I stick to a very strict routine and time them perfectly with eating, normal life stuff and relaxing lol (obviously not always possible)

Tips:

Mint oil in the shower before bed

Heat patches on lower back and neck

Put your feet in a warm bowl of water... (strange I know... but seems to help)

Listen to your body... rest when you need to!!

Electric blanket on your bed..

I have a foot massager plugs in... helps circulation...

I also where a back support (over arms and around waist) plus a hip support.

Hope something here helps, if you ever want to chat just message me.. this group is extremely helpful and supportive.

I hope you find something that helps you manage xx💚💜❤

[Sheefy123 in reply to Backbracelady]

Thanks for the reply.... your symptoms sound so alike to mine and your tips are very helpful. I recently tried tramadol and paracetamol and they worked much bettter than codeine, however the doctor only gave me 30 tablets! Heard pregabalin are good too so off to doctors AGAIN today to demand something new. The only thing that seems to help my pain a little bit is the constant use of 3 heat packs lol. My electric bill must be sky high with the constant use of my microwave lol. I've even bought an electric dressing gown style blanket which helps. Amazon for £30 works wonders when in bed but need to be plugged in so not ideal for when I'm not mobile. Thanks for your tips, I'm going to try the mint oil stuff hopefully that will help me relax before bed x

[Backbracelady in reply to Sheefy123]

Be persistent with the GP, lots of them don't really know much about Fibro... so tend to just give meds they know of...

I have spent so much money on things to adapt my house and lifestyle its ridiculous!! I buy heat packs now from the pound shop!! 2 for a quid... much cheaper than anywhere else and work exactly the same.

I hope you get what you need today from GP, let me know xx ❤💜💚

[Sheefy123 in reply to Backbracelady]

Yeah I'm going to tell them today that i need something stronger!!! And i have bought heat bean bags online which can be reused and heated up as many times as you like in the microwave. They work wonders at times but the pain is constantly there at the moment. X

[Backbracelady in reply to Sheefy123]

I use those bean bags too, just if I have gone out in the chair I pop a heat patch on for when beans go cold...

Good Luck today x

[Sheefy123 in reply to Backbracelady]

Good thinking! Might grab a few of those for when I'm out and about driving. Will update when I see the docs. Speak soon x