I have severe OSA i use a CPAP, the disruptive nights I have make the Fibro unbearable. This has ended my career as a carpenter and what feels like my life.
Due to severely restricted activities, because of the pain, I have gained weight. This makes my OSA worse and in turn my aches and pains are increasing daily.
I eat healthy but can't lose anything, I tried exercising but that just makes things worse. The muscle pain can last a week and is not sustainable.
I don't want to interact with the world as I'm embarrassed about what has happened to me. Avoiding friends and family is now normal. I've seen the expressions they pull when you try to explain what happens.
On top of this I have had to re apply for pip. I won a tribunal only last September, was awarded standard care and no mobility. This time I'm more prepared and will be going for max on both.
If anyone can relate please get in touch, I'm really struggling to cope and would appreciate any tips.
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Nelache
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I absolutely relate to your post. I went from someone who was constantly active, living at the gym to a blob. I gained five stone in the last two years, some through horrid medication and the rest through self destruction. I have been using a CPAP machine for the last six months, my son thinks I look like Darth Vader! According the machine it has relived my OSA but then you have to throw in the fibro.
I have put myself forward for a gastric sleeve as I think this will sort my weight out for good. I have been looking at micronutrients i.e. vitamins etc to try and increase my energy levels. I am also trying to push my activity a little. Even if this a slow walk down the road and back. I ideally want to go to yoga to help stretch, but like you I would rather lock myself away and see no-one. I have started doing yoga with u tube, but it is really hard. From all the pain clinics and research I have done, you have to move a little. Thats means not going crazy in the gym but just walk for a minute and then the next day two and take it from there.
I am also applying for PIP again, was turned down two years ago. I guess it validates what we are going through, but maybe not define us. We all know its a horrid horrid condition, unless your family and friends have suffered with it, they simply cannot understand what it is like. I think we just have to try and push ourselves to be human. We are not designed to be shut away without any human contact or interaction. Forums like this are great as we have other people who we can relate to. I wish you all the best. Maybe talk to your GP, they could refer you for some counselling which might help you talk out your feelings.
Hi Poppy, thanks for getting back to me. So nice to hear I'm not alone, I know that sounds odd but there's comfort in numbers being like this is extremely lonely.
I take vitamin D, B12 and folic acid, I do believe they can help even if it is just a placebo affect.
The Dr did put me on setraline, which I believed has helped. I'm not big on talking about feelings but I appreciate it might work for others.
Did you take your Pip to tribunal, I went from 0 points to standard that way. It's more about a sense of justice than the money.
Bless you, I know how dark some days can be. Glad to hear you are taking some supplements, I don't think they have a placebo effect and will be doing some good. I have started taking magnesium and zinc as well. Is setraline a anti depressant? I am taking one which I hope is helping.
I think I have got used to my CPAP machine now, its weird how things can just become a habit isn't it? Like you it would feel strange NOT to wear it! Do you find that it marks your face at all? I think I lean on my hand when I sleep and push the straps in to my skin!
No at the time I didn't take my PIP to tribunal. I think I got about four points but I just gave up at the time as I didn't have the fight. I spoke to my GP about six months later to explain that I didn't go out as I just couldn't manage with the walking. She suggested applying for a blue badge without the PIP as the local council will look at applications with some medical report. I did this online and gave my GP's details and received one in the post! I didn't have to go for an assessment or anything.
I truly believe that most people get turned down at the first stage of PIP unless the evidence is overwhelming. Unfortunately I think they depend on people appealing it before they take it seriously (Thats just my opinion) I made my application over the phone about a week ago and I am waiting for the application to come through the post. So I will let you know how round two goes! But I will appeal this if they so no again. I agree, there is a sense of justice as no one can understand how WE feel.
Do keep in touch in this forum, I think members look out for each other as they have a shared understanding of what we all go through.
So on this rainy Friday Dan, I am sending you a sincere and gentle hug x
Hi Nelache,can totally relate,told i have osa after sleep study in May,knew i snored a bit but to be told i stopped breathing 38 times in an hour was a big shock.Next morning packed off with c pap,couldn't get on with it,given smaller device,tried to use it end up taking it off.Thought the constant fatigue due to the fibro,obviously a bit of both.Got appt end of August,they'll probably ask for c pap back.Like you i eat healthily but can't lose weight,even joined slimming clubs to no avail.Had Pip assessment other day,sure I've scored 0 as have mobility,they can't see the constant headaches and joint aches.Haven't worked since November,miss work and my colleagues,know how you feel,everything's changed and i don't like it one bit.Feel embarrassed like you telling people,making excuses not to go out etc.This illness makes you feel isolated at times doesn't it? Sue.x.
My test showed 55 times I stopped breathing and held my breath for two minutes at one point !!! This is not a competition I'm happy to win trust me. It's described as severe OSA, I had no choice but to learn to live with the cpap. Now I can't fall asleep without it, I still wake up 5 times an hour but that's an improvement. Dreaming is amazing you should stick with it.
The other option is surgical, which I've had, to increase the air waves. It's really really painful and didn't work for me, my nose is now straight though :).
Extremely isolated, I'm so happy to have found you guys though.
I am so sorry you are struggling so much at the moment.
Additional conditions on top of Fibromyalgia can be so incredibly challenging.
Is it possible for your GP to refer you to a dietitian? Do you think that may help?
Fibro can be such a lonely illness. However, don't forget that we are here and there is usually someone around 24/7 if you need someone to chat to.
Have a look on our mother site. You may find some useful info on there fmauk.org
I hope that you enjoy the forum. There are so many of us going through various things at different times and you'll find everyone so supportive and compassionate.
If you would like to know how to lock your posts I have given you an easy to follow guide on how to do this:
My Dr's are useless, they put me on diet pills, orlistat, they don't work unfortunatley.
With osa adrenaline wakes you up out of an apnea but this in turn makes you extremely hungry. So in my sleepy state I eat not knowing what I'm doing. My partner hides the junk food, i.e kids treats, the best she can. We are going to buy a lock box as I always find them, or maybe I should be locked in a room.
In the daytime when I'm conscious I only eat healthy, religiously.
Hi Nelache Welcome to our wonderful forum 😀 I'm sure you will find it invaluable chatting to others who have similar experiences and at different stages of their lives with fibromyalgia.
I'm sorry you are suffering so much my friend & I'm also sorry you are having to go through these benefits trials & tribulations, it is very stressful. I think a lot of people are in the same boat and I really do wish you well with it all. I hope you have got some professional advice.
Ps.It's a good idea to lock your posts to the community so they are not accessible from the internet. If you look to right of screen you will see under "Pinned Posts" a number of blue links & instructions on how to lock it.
I can see already how nice people can be on here. Im currently under the sleep clinic and a rheumatologist but think I've had all the treatment available. Thanks for the advice, I will lock it as soon as I work out how to do it.
You post sounds like something I have written about myself. I suffer with osa and use cpap. I'm extremely obese and heartbroken with depression. I'm panicking about my pip renewal. Here if you would like to chat. Take care xx
Sleep apnea like fibro is an invisible illness that only sufferers can relate to. I spent so many years not sleeping properly I never knew it wasn't normal.
For me it's the zombie eating that's a problem, I'm trying to find ways to fight this. But with three kids in the house there's always some junk food around. This is exactly what our body craves.
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.
I also have Osteoarthritis and use a C-PAP machine for my sleep apnea. I have gained a little weight due to a maintenance dose of steroids that I have for my COPD. I can relate to what you are saying my friend and it is something that I discuss regularly with my specialist.
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
Has your specialist given you any advice on handling this nightmare of a merry go round. I'm due back at a rheumatologist on the 14th Aug not expecting any help though really. Just confirmation everything else has been ruled out.
I have not had any advice but they gave me Statins as they said it was increasing my Cholesterol as a result of the steroids! I want to truyl wish you all the best of luck with Rheumatology and take care my friend.
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