I joined today as I can't take this anymore

Hi Patsy,

first welcome. I joined here a little over a week ago and it's been a great support for me. You clearly have a lot going on and I'm glad to say it was a great move. You don't say if you live in the UK or not, I only ask because the healthcare system is different and so it helps to be able to point you in the right direction. 

The things we can definitely relate to are the fatigue, the pain, the lack of understanding, fighting the medical profession, and the isolation. Many have lost so called friends and have had to learn to adapt to that just to get by. 

You seem to be on an incredible amount of pain medication. I have just had to have my meds changed as my local authority no longer allows patients to be on two or more opiate meds at the same time and so I have had to come of morphine. I'm currently on 50 fentanyl, diazepam (for muscle spasms), pregabalin, amatriptalin and paracetamol. I'm also taking meds for other conditions and had to come of naproxen as it has caused me to have ulcers. I too have migraine, both the regular type and hemaplegic migraines, which for me, mimic havoc a stroke. These leave me with complete right sided paralysis and take about three months to recover. I too walk with crutches and use a wheelchair, although it does have the large wheels. 

I only tell you all this so that you know we really do get what your dealing with and also to be able to point you in the right directions. I would strongly advise you to get a new occupational health assessment done as soon as possible. This can be done through your GP or you can get in touch with adult social services who can come out and assess your needs. I have had adaptations done to my home and aids to help me function much more easily in my home. The focus is on allowing you to be as social and able as you can and want to be. I am also really well known in my local physio dept due to arthritis and EDS and through that I was able to get a made to measure wheelchair that has a angled beck and is self propelling. They can also assess the type of wheelchair that best suits your needs. I'm almost certain that your GP can refer you for a wheelchair that best works for you as well. I also get acupunct on the NHS which has really helped my pain, especially during the medication alterations.

the sad fact is, is that pain can make you depressed and depression make your pain feel much worse, so it's really tough to know where to break the cycle. Can you ask your GP for a referral to a pain clinic. I found talking to a specialist pain psychologist really helpful, because I learned how pain is perceived by the brain and how to avoid all the peaks and troughs. Once I understood it, I was more able to cope with it.

i really hope some of this has been of help, and please excuse any typos. Tiredness and painful wrists are not a good combo when typing an essay. 

Take care and gentle hugs.

Hi Patsy;  no wonder you "are at the end of your tether"....I would be too, with all of your issues....and let me reassure you, that I/we have all been there too....but fortunately for me, I don't have half of your medical problems...so am really feeling for you, and it would make Everything a lot worse, being on your own.    Please don't "give up "  for,  as you say, you have some very good friends, who Do need you, and would be very badly "hit", if you do.   I don't have much to add, today, as my mind is feeling a little overwhelmed, too, today....I am lucky in that I have family, but they are needing me at present (for next couple of days)....but am here if you Just keep typing....in meantime, perhaps could you try giving one of your good friends a call via the phone, and ask them to come over for a cuppa....I really think that if they knew how really down you are feeling, they would do so??  I will try and get back to you in am (I live in Australia), so it's nearing 5pm here.....and if you start typing....tell me all that you are thinking....just bit by bit...and we'll work together to get some answers........believe me, there are plenty of very helpful gals/guys on this forum, who will all help....we have all grown to rely on each other, and I'm pleased that you have taken the first step, in reaching out to us all...........will be thinking of you overnight.......and receive this with one of my gentle smiles and a hug for tonight......Bron

Hiya patsy,.....poor you..what a battle you have there...please be encouraged by the fact that we are all sufferers and do really understand..we've all been where you are at one time or another...anytime you feel like venting..this is right place to do it...because we are all very empathetic..we are just there for eachother any time, even if we live all over the world and have differing time zones......I live in Australia ..there's also many if sufferers here too, there are people on here from all over  the world..with a wealth of personal experience and knowledge..which is very helpful for all of us..some of us, me included have had this rotten  Fibro for over 20 years...all of have put up with many symptoms long before diagnosis for about 10 years before .. ...you do have a lot if medical issues don't you and sooo much medication,,wow!!!!  Fibro bring with it many many other autoimmune us sus too some you have named.....the IBS..us really awful...my friend had a special diet that seemed to help her no end...but I'm sure you would already know about that...we all seem to have a depression with Fibro..at some time or another too....gotta say..those early days of diagnosis were certainly the worst..I have four autoimmune diseases...but I manage to live with them well now...with very little prescription medication...so there is some light at the end of the tunnel...didn't think it would be possible once......really feeling for you right now. Patsy...also stress is the worst thing for Fibro..yet it's just soo unavoidable at times...Gentle hugs to you patsy, keep us infirmed..hooe things get better fir you really soon..as far as friends go...yes I've had to lose some- my choice...the same with some family members to an extend...they really have to get it..or they will end up getting you...if you know what I mean..:-) xx be blessed patsy...

Hi Patsy

Welcome to the club nobody wants to be in.  First and foremost you will find help, understanding and many laughs on here.  Have you tried epsom salt baths.  I find them soothing.  I take no medications due to side effects but manage to control it to a degree by cutting out refined sugars and gluten together with sessions of hypnotherapy and some very gentle exercise and some supplements.

The best advice I can offer is to learn to say "no".  Very difficult but I have found this one of the most important things to do.. My friends and colleagues understand that if they invite me out of a work evening I will say "no" because I would be fit for nothing the following day.  Bless them they still ask as they don't want me to think they have not included me in anything. They understand and will work  round my work schedule if they can.    You need to be able to say no to requests if you feel that request will lead to a flare or you just feel it is beyond what you feel you are capable of at that particular time.  There will be other folk along soon to give their stories I am sure. Take care

Hi Patsy

Just like all the others have already mentioned......you will come across may people with similar aches, pains, fatigue and so on. You have come to the right place. 

I joined 3 months ago after finally being diagnosed with Fibro in Aug 2014, I have been suffering for over 20yrs. The support you will gain from this forum is so overwhelming and your NOT alone.

Since my diagnosis, I found Cognitive Behaviour Therapy(CBT) really helped me with the mindfulness of the thought process we all have. I have not been on any meds for more than 15yrs. This is my personal choice after the first few years with pains I was on many meds but found that they were not my best friend.

At the moment I am on Ayruvedic herbal remedies and have only been trying these since Feb 2015 and it's too early to say as it takes some time for them to get working.

Also having a positiive and staying calm away from stress is the way forward for us. It's a challenge on a daily basis some days will be good and others will be bad. 

The support on this forum will definitely make your day a better one.

Gentle hugs and welcome  x

Hi patsy welcome to the forum I 1st came on here 15 days ago, Im so thankful I found this site the ladies are on here are really supportive. we support each other and offer advice to each other. like you I felt I could no longer take any more, what with the pain and the different symptoms fibro throws at you. It all started for me in 2004 when I started to become ill I had 3 years where i spent 6 months and over in bed unable to walk and carers having to come into look after me after many tests and seeing many specialists I was finaly diagnosed in 2014 by a rhematologist. trying to cope with a chronic illness is very hard. You need to get as much help support as you can your my gp tried me on different meds which I had severe reactions to so Im just useing hot water bottles and taking ibuprophen you will find its trial error and most things. until you find something that works for you. your gp could refer you to a pain clin and for cognative therapy. also wher I live our nhs offers us 12 weeks of free acupuncture and also offers at our local hospital for so many weeks hydrotherapy. we all have good days and bad days. all you can do is take a day at a time. easier said than done but try not to stress and worry as it only makes our condition worse.ask your gp to print you out a fact sheet on fibro, and see if where you live have a support group you could possibly go to.we are forever striveing to find ways of making our condition more tollerable. as yet their is no cure for it. I have felt like giving up in the past but after finding this wonderful forum and great ladies its given me so much help and support that I no longer feel isolated and alone and dispairing. you are not a lone you have us on here. you can sound of as much as you like. also we have all grieved for the person we use to be. but now we have to try to find a way to accept the person we have become. we are learning all the time with this condition. take care gentle hugs we are here for each other