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Advice needed please...

PostPosted: Wed Jun 03, 2015 5:45 pm
by Louisa01
Hello all,

I'm new to this forum and thought I'd plunge straight in and ask for some advice.

I'm 22 and I was diagnosed with Fibromyalgia last year. It's been an interesting journey so far, as I struggled to actually get a diagnosis for some time (which reading through other peoples experiences, seems to be fairly common?). Until my last visit to the hospital, I hadn't felt supported at all. I was told to look at the NHS site and that was it.

I'm a relatively 'busy' person I guess - last year I set up my own dog training company. This is mostly a part time job however there is admin galore ... but I can safely do this in my house & in my jammies if needed. I also own two very active dogs who are trained and walked twice each day. I also try to see my Grandparents once or twice a week, which is extremely mentally exhausting as my Grandma has dementia. On top of that, I try to lead a fairly active social life and am (trying desperately!) to lose weight by exercising nearly every day.

I am now in a slightly routine which I have found helps - I get up at 6:30am every day and go to bed at roughly 10pm (sometimes earlier depending on the day!). I'm actually sleeping fairly ok... there are some nights where I just can't get to sleep & some nights where I constantly wake up. However it is better than a year ago... the original doctor put me on Amitriptyline to help me sleep as 'the better quality of sleep you have during the night, the more you're body will rest'. They didn't do anything for me so I took myself off them after 8 months.

The parts I struggle with the most is the extreme fatigue, pain and feeling generally 'down'.

I've recently had a fairly positive appointment in London. The doctor I saw went through various things... first off saying I have secondary Fibromyalgia as I had an illness for most of my childhood into my teenage years (Juvenile Dermatomyositis). She also went on to say that I need to try and retrain my brain...

At the moment I am napping an awful lot and she said that technically I'm having way too much sleep. I try desperately not to nap but depending on how much I've done, I find it very hard to relax and not fall asleep. This week I'm exhausted as I was dog sitting my friends dogs and then was at a dog agility show the week after. So far I've had a nap everyday this week as I'm absolutely exhausted. The doctor wants me to cut all naps.

She also said to increase my exercise level. So I walk around 2 hours per day, at different paces. I've started the couch to 5k and try and run 2-3 times per week and then do exercises on top of that. However, she said that I should gradually increase my exercise level even more.

I also have bad anxiety, which has just seemed to have heightened as well as feeling generally quite down.

So if at all possible, I would generally like some advice please. I don't know what to do as although my Mum tries her hardest to understand, she doesn't completely get it & nobody else that I talk to about it, gets it either.

I don't know if what I'm doing is right or if I'm just putting far too much pressure on myself.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 5:59 pm
by Zia2014
Welcome to the forum.

Err, wow! I am bowled over by how active you are. There aren't many people on here who do as much as that, that I know of. We are generally told to get some exercise, but as a lot of us struggle to do *any* then a short walk would probably count.

Forgive me for this, but I do think you are putting way too much pressure on yourself - and so is your doctor. Was she a specialist/rheumatologist? I can't believe anyone who knew about fibro would suggest you do more than you already do, and I think your constant napping is evidence that you are pushing yourself too hard.

How did she diagnose the fibro?

What sort of pain have you got? I know I wouldn't be able to run at all, for instance, as I get pain in my feet, ankles, calves and hips.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 6:29 pm
by Louisa01
Hiya, thank for your reply.

After reading through this forum and lurking, I did wonder if I was pushing myself... which would make sense why I'm bursting into tears/feeling exhausted all the time.

Do you know, I don't even know if she is a specialist! I know that the Doctor I saw previously (who diagnosed me) was a specialist. Due to my childhood illness, I go to the rheumatology department and generally see specialists in the field... however I cannot for the life of me remember if she is a specialist. I have to say, I'm not amazingly happy with how its all been treated up to now as the last visit was the only time someone actually went through things with me... be that not the best advice!

I have to say that the pain isn't constant however when it's at its worst, nobody can touch me. It generally hurts the most around my ribs, arms, tummy and thighs.

A couple of years ago I had a flare up of my childhood illness. After this subsided, I was feeling fine for around 4 months. I then started feeling extremely tired constantly and then the pain came in as well as the 'fibro-fog'. I travel up to London every 6 months for check ups and I kept saying that I didn't feel ok. It was only when I pointedly said 'I'm 21, there's no way on earth that I could do a 9-5 job and lead a normal life also. Something isn't right' that the specialist decided to say that he thinks I have Fibromyalgia. Due to my regular check ups, I have constant blood tests and scans.

P.s thank you! I seem to put an awful lot of pressure upon myself and always feel guilty for having naps.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 6:46 pm
by Garyl
I have had fibro for 6 years now and is getting progressively worse i take a cocktail of medication to help but it only goes so far, whilst i have a very good doctor who does her best to help me.

i do as much as i can daily but it is a struggle i realised how bad today when i was at hospital fro a un related complaint, i had to abandon my walker to get on scales and nearly went over on to floor, nurse told the doctor this and when i went through she asked what was occuring i said it is Fibromylgia to which she replied i am sorry to hear that it is a awful illness can they do anything for you i said all they can has been tried, so she went on to treat why i was there. she said i was first fibro paitient she had seen.

So Louisa do your best and take all the help you can as it will help

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 7:15 pm
by UnderSiege
Hi Louisa and welcome.

It sounds to me like you're just too tough and stubborn to give up but you're doing the right thing by getting exercise... just remember to cut yourself some slack when needed.
I have osteoarthritis mainly in my back as well as fibro and all I ever hear from my GP is "blah exercise blah" so I try but often take that and working way too far and become the architect of my own downfall every few days as a result. I find that the information I'm given at least is conflicting; exercise for the arthritis but don't exercise in case of fibro flare up... oh look, it's happened anyway because you're stressing about it!
I must reckon in my limitations more!

I personally think the medicos take this exercise thing too much to heart. Most people in their day to day lives actually get a decent amount so unless you're very overweight it doesn't need to be pushed too hard (certainly not with chronic pain conditions factored in)
The other thing is the variability of fibro... some can work a lot, some a bit and some not at all, and even within that there are good and bad days. Also some who have had it for varying times have better management of it than others. It's incredibly varied in it's symptoms and effects just like people or wildlife are varied but not as interesting or beautiful... There's a certain poetry there lol.

As for the anxiety, I totally feel for you there. I don't know what your symptoms are with that but I get horrible stress and anxiety which manifests as often near constant gagging which for me beats the pain and fatigue in terms of awfulness, and occasional panic attacks, absences and furious rages when I snap (we all have limits to our patience and tolerance)

Anyway, keep on keeping on and have a good one.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 8:12 pm
If I was you, I would listen to what you body tells you, it is ok to stretch yourself a little bit but going overboard can cause even more issues. After being a single mum for many years I couldn't wait to get a job, my life was getting on the up, I struggled with IBS and a few other things, but I met a bloke, moved from North to South of England, started work, and wow within a couple of years the aches and pains just got worse, I do not know why, I am just about coping working full-time, I often burst into tears, but I do not want management to think I can't do my job, I have asked them for a little help, I have already changed the mouse, as I work with computers, but even the constant clicking can start to hurt, so I have asked if they could provide an I-pad so I can alternate between computer and a touch screen, time will tell if they provide.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 8:35 pm
by N3moHoes
Lucky for you that you can move at all. I cannot even stand on my own anymore and have just purchased a very expensive small wheelchair just so that I can get to the toilet which is 8 feet away from me. I have 2 hours sleep a night thick is normally 4am to 6am. I can longer nap during the day I suffer with full body vibrating 24 hours a day which is intensified when my body tries to relax. On a scale of 1 to 10 with 10 feeling good, I'm currently at 1. That's not mentioning the extreme excruciating pain I'm in 24 hours a day, my Morphine, Naproxen, Gabapentin, Amatriptyline are not helping at all and I cannot get to see another Specialist till 8th September so my outlook on life at this time is very bleak.

Re: Advice needed please...

PostPosted: Wed Jun 03, 2015 8:54 pm
by Flitsy
Hi Louisa

I'm actually with you on everything you're doing and think your doc is right.
I was diagnosed like you at the age of 21 and am 38 now, after having a car accident. I made the mistake of just cuddling up to the pain and not doing anything.
However I accepted it wasn't going anywhere and now I plough on through life.
I'm like you and have a dog that I also show and do training / agility with. I also tried the couch to 5k run but found that once I put in my headphones and pictures being in Ibiza clubbing, I did 5k on my first run. And I haven't run in yonks. I didn't think I could.

My range of motion has been limited and my old doc always used to blame everything wrong with me on fibro. I changed docs and he sent me back to hospital for treatment. I've been having accupuncture and physio in conjunction with each other and it's helped a fair bit. That burning pain in my tummy and lateral muscles has gone down a fair bit. My range of my motion in my waist is also coming back. I was literally "stuck" for years and couldn't bend either side.

I also work full time and a few days I work from home. I don't sleep much and wait until I'm exhausted before I sleep as it's some times painful for me to sleep on my sides. I get that pain in my ribs. I'm not on any medication and have "trained" myself not to take it. Others wouldn't agree, but that's me. I've accepted the situation.

I also wanted to add that today I went for physio and she gave me a handout to read about retraining my brain's map of pain. Current studies show that the weird sensations we feel are from a central
Nervous system that is kind of stuck on a loop. She said that the brain keeps telling you that you're in pain when physically there's nothing wrong with you. She said a lot of factors have a part to play that "map a memory of pain". Think of it like how when you hear a certain song takes you to a certain place in time? That's now it works. So I get what your doc is saying. She's given me some techiniques to work on to try and break the cycle and stop my body from always thinking it's in "danger mode".

I also want to take a nap in the day but if I let it become part of my routine, then I think I will be more tired. I get stick from some other fibro sufferers that say I can't possible have it as I'm too active - but I do have. I don't pay any attention.
I only have one life and I'm not going to let fibro defeat me

I hope you do well and good luck with the doggy stuff!!

Re: Advice needed please...

PostPosted: Thu Jun 04, 2015 8:03 am
by SchroedingersCat

I'm like you, Louisa, very very active, fitter than many people my age, work full time, and keep pushing myself. People on here generally tell me I do too much, but having watched a couple of friends with FM slide into wheelchairs after slowing down to a standstill, I'm not about to let that happen to me. I also don't take medication, and haven't seen a medical professional (other than recently an occupational health doc through work to see if my request for a work at home day once a week should be supported) in 18 months. Keep doing what you want, but I would agree with the doc about naps, I avoid them like the plague even if I am absolutely shattered, and just go to bed early if I'm that tired. Monday to Friday I'm up at 5.30 a.m., some days back in bed by 8, other days (like yesterday) I'm up till 10. Weekends I sleep later and stay up later. I have a very active hobby as well as a very active dog, so I can empathise. Try not to worry about other people not understanding, unless you have a chronic condition yourself, it's not easy to understand - hell, I don't understand some people who have FM as my condition is so much less severe than theirs. If you need a day where you just say, enough, I can't do anything today, then take one, but make sure it's only one and don't make a habit of it. The more you do, the more you can do, in my experience.

Re: Advice needed please...

PostPosted: Thu Jun 04, 2015 10:03 am
by carolad
I think you know yourself what works best for you :-) For some people, pushing themselves works...for others, it just makes their health worse. I'm one of the latter ones. Until last year, I was working full time, going to the gym, pushing myself to the limit even when I felt exhausted. I felt awful and I looked awful - thin, pale, drawn....and then I reached a point when I just felt I couldn't carry on.

So...I reduced my hours at work and stopped pushing myself - I stopped going to the gym and rested a lot more. A year later, I am feeling SO much better - I've put on a bit of weight, I am looking better and just feeling so much more on top of things :-) Now I am at the stage where I feel I can start doing a bit more so I'm going for a walk every day, trying to build up my fitness with the aim of getting back to the gym at some stage. But I'm not putting any pressure on myself...all in good time :-)

Listen to your body, not to what anyone else says :-D

Re: Advice needed please...

PostPosted: Thu Jun 04, 2015 7:32 pm
by hannahlouise
Hi louisa I was diagnosed officially a couple of months ago and doubted it as I don't have anything as near as bad as some of the other people, I'm not as active as you but I do work full time in a new less stressful job. I know I should do more but I just lack the motivation, my question to you all is does it get worse or will it stay as it is now?

Re: Advice needed please...

PostPosted: Fri Jun 05, 2015 12:20 am
by Gracious
Offically hannahlouise they say the condition is not progressive. I personally feel eveyone will have differing journey's with there fibro. I've had long and short periods of deterioration and the same with periods of remission from symptoms, which allowed me to rebuild strength and flexibility and regain some of my life back.

I think with fibro, you have to work your own personal journey and during this journey, just like life there will be good times and bad times. Obviously the lengthier bad times can lead to muscles atrophying and this can exacerbate things and if the remission is short it can result in progressive loss of flexibity and muscles strength which leads to mobility issues.

Obviously as we get older, just like everyone, our bodies naturally age and this leads to additional health issues, on top of the fibro.

The thing about fibro is, its just so different for each of us, yet similar....leads to so much confusion.

The best thing is to get good at listening to your own body and what is needs and doing what it takes to take care of it as best you can.

You will not know whats a head for you, but you know exactly where you are today.

With loving kindness

Re: Advice needed please...

PostPosted: Fri Jun 05, 2015 7:11 am
by hannahlouise
Thanx for your reply gracious it's been a long road for them to get to thus diagnosis so I will just wait and see what it means for me now, along the way they diagnosed hypermobility, GERD and something to do with my osephagus. The CBT helped with the sleeping and I've got an assessment with the pain management team in a couple of weeks and some breathing studies as well. Hopefully I will get some answers from them all!

Re: Advice needed please...

PostPosted: Fri Jun 05, 2015 12:05 pm
by carolad
I think remaining positive and concentrating on what you CAN do, rather than what you can't, is important. I think if you start to think of yourself as a 'victim' and dwell on the things you can no longer do, then you get into a downward spiral of doing less and less, you withdraw into yourself and become depressed. Once you get to that stage, it is hard to pull yourself out of it.

We have so much to feel grateful for and it is easy to lose sight of that when you are having a bad day. Keep strong and keep positive :-D