Help please??: Hello I'm new here :) my... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help please??

Rachywillo profile image
19 Replies

Hello I'm new here :) my partner male 46, has fibromyalgia and I would love anyone's help and advice on what I can do to help him and to be able to understand this illness a lot more. Any tips for me? Or any suggestions of things to help? His main issues seem to be the constant pain and the chronic fatigue - bed time is a nightmare for him he sleeps patchy and he is restless . I really want to be able to help and understand more , he smokes a lot and when he can't settle gets up and makes a coffee and has a cig - not sure that is helping him . All advice greatly appreciated Thankyou! :)

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Rachywillo profile image
Rachywillo
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19 Replies
TheAuthor profile image
TheAuthor

Rachywillo

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I have pasted you a link to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information:

Fibromyalgia Action UK

fmauk.org/

I have also pasted you a second link to the site, and specifically the pages relating to 'A Patient Booklet' that explains all about Fibro:

Fibromyalgia Action UK - Patients Booklet

fmauk.org/information-packs...

I am so genuinely sorry to read that your partner also has Fibro, and it is a horrid illness to have. I can relate to the sleep issues, along with chronic pain and fatigue and I want to sincerely wish you both all the best of luck.

All my hopes and dreams for both of you

Ken

Shadows-walker profile image
Shadows-walker

Hi the best thing I have witnessed is when a friends husband went along to a

Pain and fatigue clinic ,they explain what's happening to the body and brain and how it effects us ,how to pace , and except . And what melds do and how they help some and not others .

My friend thought his wife was just being lazy , he's brill now so much understanding it's incredible the difference in him .

Ask your GP see if he can get you both a place .

Limit his coffe to no more than 3 caffeinated drinks a day ,find some good decaf substitute that he likes , take a look at his diet , stay away from grapefruit ,pineapple juice is good , make sure he gets his 5 a day fruit and veg , stay away from white bread and white sugar change to unrefined . Try Epsom salt baths 2 tbs in deep bath soak helps aches and pain , try an smokers angel really good for giving up and replace nicotine withdrawal expensive to start but will save health and pocket in long run .

If he can walk gentle short ones , but remember to pace , if he like most of us can't sleep , don't force it rest when he can , he's going to be very frustrated and it's going to make him cranky till he learns exceptance .

You make sure you rest and don't take on to much , stress is the worse thing for you both .

Take care

Shadow x

Dhuillse profile image
Dhuillse

sheknoweverything.com/9-thi...

The above link is a good one. Let me know how you get on with it

josephantoine profile image
josephantoine

The firstly,help him to give up smoking as, smoking is his worst enemy, I know its difficult, but it will help him with blood circulation. It's hard work but the best support you can give him is your love.

Regnofibro1 profile image
Regnofibro1 in reply to josephantoine

He might try going to ecig to help him stop. I stopped cigs last December and went to ecig. Not that much better but went from 24 nicotine to now going to 6 my son in law is down to 3 now. I am stopping and my oxygen in take went from 84 to 99 percent. My doc is happy that after over 30 years I am finally quitting. It's not hard with the ecig. I feel better usually ( if I don't run out of my meds) .

tortoise123 profile image
tortoise123

All I can advise is the following, accept his moodiness, this will be most of the time,

you will want to go out but he is just too tired, you will cook a lovely dinner and he just cant eat it, he wont be interested in family, friends or anyone, you will need to make him change his clothes and it may come to you bathing or showering him he wont show you much if any affection and in bed "forget it".

How do I know all this, because I am a 63 year old male who has suffered with the deadly fibro and diabetic neuropathy for the last 10 years.

All I can ask you to do is to carry on loving your man even with all you have to take because deep down your man will know and appreciate this but just will not feel like showing it.

lCllCl6 profile image
lCllCl6

Well put you gals and guys sometime we don't even know how to help us either when you have done all you know, taken all the meds and the pain still has not let up. I sleep a lot with heating pads sometimes wrapped around my feet sometimes on my lower back upper back on my legs. Where ever I can get some relief. My prayers are with u both

Regnofibro1 profile image
Regnofibro1

All the advice above is great! My only advice is just be there for him. This illness is very hard on him but it seems to be harder on our loved ones. They can't really do anything to make us better and they want to. Just educate yourself and keep trying to find the things that help him. We are all different so fibro affects us all different.

Ripley1234 profile image
Ripley1234

Hi I'm new to frybromaylia too. Learning it can effect people in so many different ways. Keep positive and take every day as it comes. X

BlueMermaid3 profile image
BlueMermaid3

Hi there

I've had Fibro for over 30 years and have had problems sleeping my whole life. I was on sleeping tablets for many years. Nothing even makes me drowsy.

But, I tried the normal Nytol out of sheer desperation. Now when I've had days of sleepless nights I take two Nytol and they actually work! It's worth a try.

Would your partner join us here on the forum? All are welcome and we do have other men on the site.

We would make him very welcome :)

All the very best

Blue xx

Rachywillo profile image
Rachywillo

Firstly Thankyou!! All of you so very much I've read all of the replies and they're so helpful

I think the main thing is he's exhausted yet he doesn't sleep well at all, he's still trying to work so he's grumpy and moody which I understand - I don't ever think he is lazy far from it. I just worry he doesn't open his mind now to things that can help him - I'm scared that he's resigned hiself to the illness and has succumbed to it and almost given up. Does that make sense to you without me sounding like I'm expecting too much of him? I just wish I could accept that this is life for him now but my naive/ignorant brain doesn't associate his moods/lack of interest in me or doing anything that it's the fibro so I intend now to educate myself and be more understanding x

Regnofibro1 profile image
Regnofibro1

The doctors think I was born with it. I had broken hips at birth so I really don't know anything different. I have always had pain in my life. That being said I have had to come to terms with my body as I have gotten older. Finding a good mattress and maybe some body pillows. He could try different ways of sleeping. Also taking frequent breaks and just setting down may help. Some of us have Tens or Ems units that can help. Maybe some physical therapy or aqua therapy. Talking to a doctor and getting on some meds such as lyrica or something for pain. Soaking in a warm bath before bedtime may help him relax enough to get some sleep. Moods also play a part . Try to stay in a good mood may help. It's a hit or miss on things. What helps one may not help another. He just has to see what works for him.

Rachywillo profile image
Rachywillo in reply to Regnofibro1

Thankyou he's on tramadol and pregabalin - I recently bought him some mustard powder bath salts he tried in the bath, a bath seems to make him feel good for a bit. I Just nesd to be as supportive and encouraging as I can be x

Rachywillo profile image
Rachywillo in reply to Regnofibro1

We definitely are in need of a better mattress ! X

aud01 profile image
aud01

get a divorce and emigrate......nah only kidding. just try and be as supportive as you can cause things will get bumpy.. and the fact you are asking shows you care already....good luck and i hope my humour or lack of it didnt offen you ,,,,big hugs xx

Rachywillo profile image
Rachywillo in reply to aud01

I LOVE humour !! :) Thankyou for the advice xx

aud01 profile image
aud01 in reply to Rachywillo

i was joking....honestly..... dont emigrate!!....xx

Rachywillo profile image
Rachywillo in reply to aud01

I kinda want to now you've set a seed....haha (jokes) 😆 x

aud01 profile image
aud01 in reply to Rachywillo

now my humour has just back fired on me lol xx

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