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

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.