Hi, I was diagnosed with fms and hypermobility syndrome in 2010 at 32 after suffering symptoms since I was 19. I have worked since leaving college, first full time, had our little girl in 2003, and have gradually had to reduce my hours to the 15 a week that I'm struggling to do at the moment.
I applied for pip (dla as was) earlier this year as we are seriously struggling money wise and in debt up to our ears. I have a fab family and my husband and now 11 year old daughter are amazing as are my parents, but I feel so guilty that I work 3 hours a day, get home and sleep until I pick my daughter up from school then spend all weekend sleeping so that I can get thru the next week at work.
I am so exhausted and feel that I have no quality of life with my family-we don't go out or do things together because I'm so tired or short tempered if I haven't slept or am in pain.
My life is just one big moan and I'm sick of hearing myself so everyone around me must be.
I think I'm getting to the point where I need to stop work but I don't even know where to start. Can anyone help please? :-( x
I would not know where to start with ALL I do for the FM which hit me at 61, I'm 76 now and do NOT take pharma drugs for FM issues.....is the surgery truly necessary, are they alternatives to "fix" this issue or will or could it heal on its own time...
I did a hip replacement 4 yrs ago and DREADED doing it for the FM and OA issues for sure, more trauma to the body....
I know FM can get better and I've been on a FM/CFS board for 8 yrs and know many who improved.....
Again, I don't know what you've done to "treat" the FM issues, but as I see it pharma drugs are not the answers......J
I take a lot of medication including morphine which kills the pain enough for me to continue working. The laberal tear in my hip has been there for approx 17 years and I've put off the surgery up to this point, but after a fall last summer when I fractured and dislocated my ankle I frequently have to use crutches to get about as the tear has got worse and more painful.
My parents have been against pharmacy dis and into alternative therapies since I was a child and we were always given homeopathic remedies as children. Unfortunately nothing I have tried for the fibromyalgia has reduced the pain, depression or fatigue to a level where I can function on a day to day basis.
Any ideas or suggestions would be welcome as I have never had surgery and as I say am terrified of j going under anesthetic and the long lasting effects the pain could have on my already reduced mobility. Victoria
Victoria, I hear this so much.....more pain meds the more pain -- something about the pain receptors and one's body becoming immune to these meds....
I've learned to live with some pain believe me as I choose NOT to take more and more toxic pain meds....
Your parents sound smart....my daughter got very messed up on pain meds some yrs ago....really messed up....not fibro but other stuff...she was TOO into the pharma drugs....they hurt her.
What I do for the FM is all alternative....as I've said. And know thyroid is a major connectionn with the FM mess.....
Thank you. I'm sorry about your daughter, I was in a bad way with meds last year and actually am a lot better now having reduced drastically what I take and the frequency, thanks to my family and their never ending support.
I'll look into these things further.
Thanks again
Hi Victoria.
I don't work, haven't for a number of years now and since having this Fibromyalgia my mobility has gotten worse. My daughter is 17 but says to me how much she would love to go back to the times when I was able to do everything with her. She now understands what I'm going through. I feel so guilty all the time for not being able to do a simple thing like take her out for a meal cause I never know how bad I will be. I'm on full DLA only in the last 6 months. I don't get much sleep at all and I'm tired constantly so I know how you are feeling but you are getting some sleep which is so good. Give up work Hun and tell DLA how much of a struggle things have become for you. There is no point in pushing yourself too much. Just spending quality time at home with your family should be more than enough if they are totally understanding of how bad things are for you. I don't mean to sound horrible in saying that. I too also feel like all I do is moan about how I'm feeling but again if family is understanding and supporting then you have nothing to worry about. Worry and stress can also cause flare ups so try not to worry too much about unimportant things. I hope I have helped in some way. Much love and take care
I worked long and hard to get a sleep combo that works for me and I did it...I sleep 8-10 hrs per night, wake up here and there but sleep deeply and have some nice dreams....it takes a LOT of work to live with FM but it's doable....
I can't speak for anyone else but I've probably lived with a milder case since I FINALLY got my thyroid supported....thyroid is a biggie....and so many docs are useless...
Hi Victoria, I am in the same boat, I have two kids and work full time and I am really struggling, like you I sleep on my rest days otherwise I wld not be able to work but I am using a days leave on my longest shift every week and I am still struggling :-( when my leave runs out I know I will be in trouble. I have tried to be strong but get so frustrated, I'm tired of being tired and sick of being in pain and I miss being able to go for days out with my kids because I know it will be too much :-( all I do is sleep and work and have no quality I life at all, and I have looked at going part time but my contract wld change so not really an option, am now looking at ill health retirement, but I don't hold out much hope as I know it is hard to get , but I am going to try. I don't really have any answers for you, but just wanted you to know u are not alone. We all need money to live but as I am now finding out too at what cost? We should be working to live not sleeping to work and I am sure your kids would prefer mum at home and healthier and hopefully able to do more with them as a family if you do not have the pressure of work xx sending you big hugs Hun xxx
Hi Victoria , I have hypomobility eds fibro chronic fatigue sensitisation disorder and neurovetetive dystonia , the other stuff that comes with it IBS ect I'm sure you know the symptoms. I have a hip problem for the last 15 years . Subluxations hip knee axle all the usual stuff. Firstly I'm going to outline stuff that you've prob already heard and know.
having kids is stressful, we don't eat right as we are skipping meals or eating fast foods
stress is a trigger for symptoms
fatugue is a vicious circle triggering all your conditions
stress leads to insomnia
insomnia triggers low vitamin d which triggers all your symptoms again
look into fodmap diet , it's ace its cured my IBS and helped enormous amounts with hypomobility
Sorry I got cut off
food has been my saviour
my hypomobility symptoms have improved along with everything else
i avoid sweet foods sugar ect strictly keep to a low carb low sugar diet
i eat a lot of raw food it's helped no end and I feel amazing
my weight dropped at first but then came up to an ideal weight
i don't take any of the pain killers I used to I feel so amazing
i take fit d , magnesium kelp baths to intake iodine naturally
I have basic immune deficiency so I take the natural source if immune boosters found in live food
remember candida is a massive cause of problems in the gut built up from our illnesses so following the fodmap diet helps keep this away but you can do your own research to find this out , there's lots of information regarding candida but I havnt had thrush now for 18 months since I started this not one little bit of thrush I'm completely cured . I take colloidal silver for sore throats and took candiclear, I take acidophilus tablets when taking antibiotics.
i used to get constant water infections sore throats headaches everything going wrong yo yo Weight problems sleeping for hours during the day my hair started falling out you name it. I don't have this now I controll everything with food . I still have pain fatigue hypomobility problems but nothing on the scale of what I had I was in and out if hospital and thought I would never have good days again.
I hope I've helped.
Wow. Very similar story. Hypermobile joints mean your muscles, in spine & core especially, need to be extra strong. I can't work out anymore but yoga like stuff works very well. That's about all I can help with.
Yep, used to do iyenga yoga-very lucky as my dad is a yoga teacher. Found that I have zero core muscle strength at all and due to my hip problem have had to stop for the time being. Hopefully will b able to re start following hip op. I can swim although following and defo the day after I'm usually asleep! Thanks nitropilot
Hia alig39 thank you :-) that's made me feel a bit better-I feel as though I'm giving up but all I want is to spend what time I am ok with my family who are amazingly supportive. We tried for 5 years for our daughter and although she is amazing-showers and dresses me, sorts my meds out wen I can't etc I feel like she's being short changed in a big way.
Like you my family are fab-my mum has chronic rheumatoid arthritis which happily is under control at the moment so she understands more than most and has been on at me for a while to stop worrying about work and what people think and do what is best for me. ...I think that time is here. Thanks again alig39 you have helped
The food info has defo helped-thank you. I have just had 10 days of constipation followed by 2 suppositries then an enema-dioreah for 2 days now constipation again for3 days! :-( also suffer with regular bouts of thrush.
My hair falls out in handfuls and also sleep problems-so very tired all the time then can't sleep.
Am defo going to try the diet.
Thank you very much for the info x
Thank you. I know there are plenty of people out there with the same issues but nobody I've ever met who has fms works. I always thought that I should keep going as long as I can and I have but I'm really struggling at the moment and don't know where to start.
I had a great gp who was a locum at my practice and actually got me some help and diagnosed after 17 years of being told there was nothing wrong with me.
I was severely depressed and in daily pain.
I also had cbt for 12months as my parents divorced after 38 years of marriage which caused me a great level of stress and my health spiralled out of control.
Once all this finished and I was discharged from the service I feel as though I've been launched into limbo yet again.
I had a wonderful job that I loved, was just starting training to be a paramedic and am now working 15hrs a week for minimum wage. My husband works full time and doesn't earn much but we don't get much help at all and I no longer have the energy or strength to spend hours on the phone trying to fight for what we're entitled to.
I know that nobody is going to give it to me on a plate but at the moment I just don't have the energy.
Thank you for your support and good luck with your ill health retirement and hopefully you'll also be spending quality time with your kids soon as well xxxx
Hi Victoria, I have ME/CFS, Fibromyalgia, Functional Mobility Syndrome and loads that go with ME (IBS etc) and now being checked for my heart cos it's going too fast, and I work. Part-time, used to be full-time until the kids. Had it since I was 14ish, I'm now 37. However, I am cutting back my hours and going to have a go at not working for maybe 6months to see if it makes any difference. Working for myself, from home makes a huge difference to me being able to work. I fit the hours around when I'm feeling upto it and taking the kids to school. Thankfully I have a very supportive husband and mother-in-law.
Sounds like you're boom and busting. Try to boom at work and then bust at home. Does sound like your body can't take the work. Understand the money issues. Put my claim into PIP in April this year and still haven't heard from them. However, it's working in my favour at the moment cos I'm still getting worse.
Could you do some kind of work from home with less hours which are also flexible? Maybe not in the type of work you do now but something?
At the moment energy wise it looks like you are focusing on the work, cos you have to but the family are suffering. Your daughter is already 11 she's not going to be a child much longer. You already know that I'm sure but if you don't change soon it will be too late to enjoy her childhood.
In terms of the moods I would recommend antidepresents. I know your parents and many on here say not to meds, but I felt alot better about the depression and stopped bitting people's heads off when they got my antipressents to the right level. I would feel suicidal, shout at the kids, snap at hubby and mother-in-law until we get it strong enough. It does mean I don't feel the highs I used to but I would sacrifice that to not feel those lows. I'm also easier to live with !!!!!!
Dear Victoria
I just wanted to say that in my experience most operations have helped to improve my quality of life; very much so. There were two that did not improve my condition but did not make it worse either. If I had not had the successful ops I would certainly be in a worse place so I hope to reassure you about your coming op. If you ask the surgeon he will give you the odds but they have to do this. I am hoping that you will be better once it is done. Is your doctor keen for you to have this op?
Sometimes if one thing goes right other things start to fall into place.
Wishing you all the best
Brenda
Constipation is our WORST enemy, to keep regular I take 500mg magnesium citrate 3 times per day....many take it to bowel tolerance...keep that colon CLEANED OUT.....disease hangs around there in dirty environment.....all the drug pain pills the industrialized world takes keeps the laxative industry alive and well....
It's awesome to see people like you so proactive. No excuses and all that. If you aren't able to do one thing you find another. I love it!
I 2nd and 3rd that!!!! I had no idea how much better you can feel going from maybe once a week to several times a day even with taking meds.