|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 31
|
i am in a lot of pain from both but the fibro seems worse i dont know anything about fibro can anyone help me or give advice please 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 157 Location: TYNE AND WEAR
|
Hello Cazza,
I don't have Fibro, but know lots on here that do and will give you some good advice, Take care, Much Love Alison xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
|
Hello Cazza I Have fibro and RA,plus sle lupus. are you taking amitrypline at all i do for the fibromyaliga specifically to re gain the fight over pain no sleep more pain,balance of activties are key. along with keeping pain under control,gentle exercise helps fibro. i get it worst in shoulders muscles, top of arms,lower legs,back of hips and lower back..... i do walking,swimming. but not when in lot pain,if amitrypline no good there are more options my rheumy gave it to me but also gps are able to prescribe this. so glad you posting. do email me anytime. i will post link for you below. http://fibrohugs.com/
is good source of info. my email massage4u@ntlworld.comtake care lv melly  cuddly cats make my world seem so much more fun
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
|
I can't give any advice about fibro.
Just want to let you know I've been thinking of you and are sending you a gentle hug.
Take Care
Love Paula x x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Hi Cazza, sorry to hear your added diagnosis. I was given the same on 16 April, but with no advice. Melly has lots of advice and knowledge, we keep in touch, so give her an e mail. I dont know very much about it myself yet, so good luck x BARBARA
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
|
HI Cazza
I was dx with fibro before RA, I had lots of pain in my upper back and shoulders, very painful. I too was given amitriptyline for the pain and it certainly helps. I'm now getting a lot of pain in my chest and ribs, not sure if that's from the fibro or RA.
Have you been prescribed anything?
Lyn
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 31
|
cazza here again i have not had ant treatmet apart from being given oramorph which i have to use all day.My pains are in my shoulders ribs hips and lower legs i have been in bed for the last week since coming out of hospital.due to the pain headaches and tiredness i am putting on weight and am already overweight as i take steroids for my RA so i cant win i am desperate.I am married and have a 13 yr old and a 3yr old but cant be a mum or a wife i feel useless as i cant do anything..My husband had to put the dining room table in the garage and buy a single bed for me downstairs as i cant manage to get upstairs and i wash in the downstairs sink and use the loo.I feel awful i am going to try and phone my consultants secretary in the morning and see if i can see him asap as since being diagnosed i have not seen anyone and have just been given oramorph so i need answers..
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
I really feel for you Cazza and I agree you do need some answers, and you need some treatment, for the RA and for the fibro.
Have you had seen an Occupational Therapist at all? It sounds to me as if you need a home assessment by the OTs to gat the equipment to help you manage at home.
I hope you manage to speak to the secretary tomorrow and can get an urgent appointment with your consultant.
Love, Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Thinking of you Cazza and sending gentle hugs,
You are not useless, it always stands out in your posts - you are ALWAYS thinking of your family,
Take care of yourself Cazza, really hope this time will soon pass and you will feel much more in control,
With love from Liz xxxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
just a quick message to say that fibro is one of my "list".
I really dont feel refreshed after a night of sleep and that was the clincher for me. In Bath they do a course on managing fibromyalgia and if you can get a referral I would go for it. The relaxation techniques they taught me really do help enormously.
I take medication to help with the sleep and found one that suits better and now at the stage where I am reducing this.
there are lots of websites- the best one I found for initial information is one called "fibrohugs" and it explained a lot of my difficulties.
give it a go.
Much love- I am off to see a childminder about helping with Bernice this morning. we just do the best we can.
Jenni xxhow to be a velvet bulldoser
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
|
Hi so sorry to hear you are going through this, I have Ra & fibromyalgia as a result of RA. I have found Gabopentin to be a great help, giving me a good nights sleep. My G.P prescribed it. The amyl..... made me dosy the next day .Take care Rose xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
|
Hi Cazza
hope you feel a llittle better today I have fibro as well as RA, I am on amatriptlyn at night and this is to help you relax and sleep but this does not always work, one of the best places i found i got a lot of help from was the local fybromyalga group at our local Hospital you may have one at your hospital.
you will find stairs and walking up hill is not easy in fact is impossable when you have Fybro I have a scooter that helps me and i have crutchs to help me keep my balance, the OT is very good they give you some good tips on excersice when in pain and some for when you are not in as much pain.
you will hate it to start with but like your RA you learn what you can and can not do. but please never think you are no good you are a very good person, to have a game with your children buy soft balls and table top activitys and you will be ok doing that with them as you can sit down to do them, also have a chair in the kitchen that has wheels on it and you can then move round your kitchen with ease.
if i think of any more tips i will send them to you if you want to email me let me know and i will give you my e mail and we can talk more.
soft hugs
Take care you are a very special person
Audrey. x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
|
Hi Cazza,
You certainly have been put through the mill. Sorry I don't know much about fibro, but see from other posts that you have been given some advice on how to cope with the illness from fellow sufferers. I know it's hard and easier said than done, but please try and be kind to yourself, you've been through so much in such a short time that it's no wonder you're feeling this way. I too feel that the dynamics in my relationship have changed, but as my husband has said he married for who I am and will stand by me in "sickness and health." Never feel that you are not being a mother or a wife, despite being ill, you are still the same person and loved for who you are.
I was just wondering if you have spoken to your GP about how you feel, as many GP practices have counselling services to help manage the recent changes to your life. This illness has certainly a lot to answer for and it is not unusual to find one's self feeling depressed and at one's whits end. I certainly agree with others that you should try and get as much help as you can from services to help you and your family manage at home.
Thinking of you and sending gentle cyber hugs,
love,
Barbara
XXXXXX
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
hello,
Read all your problems - thinking of you and hope that you feel better soon -
Sorry I do not have any useful advice but am thinking of you
Rose
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
|
Hi Cazza
I'm sorry you're feeling down as well as in pain - it's understandable with what you're going through. I'm surprised your theumy team aren't very helpful. Could you ring your rheumy nurse and ask for help or an appt?
We all have a lot of adjustments to make with RA and fibro, and I'm sure you will find alternative ways to play with your children and cope with some jobs. I think there is a thread somewhere with tips on how to cope with everyday jobs, but if not, I can list some of them for you. You need to make life as easy as possible. If you do not already receive Disability Living Allowance you can get help with filling in the forms, and some of the money from that can help with aids.
I think you need someone to talk to, a counsellor as suggeseted, or your rheumy nurse. Don't forget, we will always "listen" to you, you do not have to suffer alone.
Lyn
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
Hi Cazza - I have been thinking of you and wondering if you are feeling any better yet and whether you have had any more news on your treatment yet?
Julie xx
|
|
|
|
|
|
|
