im at a loss

[craftyvonnie]

hi all after 4 years of trying to get answers im now being past onto pain management team it all started of with my ending up in A &E with a what was suggested partial tear of my knee ligament . I also have awful pain in my lower back ive had lots of physio was told my mri had only shown small amount of ostio in my lower back ive had times where ive wanted to chop my feet of because they itched so much i cried in discomfort and had to give up work as i couldnt stand nor sit for any length of time. ive had breathing issues ive had chest xrays a ecg done but all came back fine i have this annoying cough which wont go but my chest is clear it dont respond to steroids or inhalers , ive been so very very depressed like a few mentioned i feel a burden i think my family are sick with me going on i try not to mention it now as i dont want to pull everyone down with me ... i so miss my jobs and cant afford to be out of work as hubby is only on basic wage the stress is awful .. i dont have any answers nor no where to turn as up until 4 years ago i hadnt any health issues its like its all come at once . sorry for the long post but i feel so alone and useless from the outside i look well but if only my body would agree . when i went for esa i was told i could walk up 3 steps and that i could do a telephone job id be more than happy to have a job like that but who would except me having to keep getting up and down to find comfort and fight fatigue .. wish i could find some answers xx love to all ... tried gaberpentin had to come of them side effect nade things even worse cant take codienne they knock me out like im a zombie i was ok with amitriptyline but the doc seems to think they were causing me breathing issues and blood pressure im so at my witts end .

[Bananas5]

You have covered many conditions here but getting a referral to pain management is a good thing.. They can look at your meds, discuss your pain and advise on what you can do. There is no magic cure and you will have to learn self management with the help of various therapies.

A good idea is to keep a pain diary about 10 days before your apt. Write down what you are doing when pain hits.You will be surprised.

Have you tried hydrocautizone cream for your legs?

Another benefit you may be eligible for is PIP. Worth asking DWP for an application form but suggest you get help completing it.

[Hidden in reply to Bananas5]

I can't reply to the original post (a bug) so posting here, hope you don't mind Bananas5. Craftyyvonne- Your symptoms sound like you have fibromylagia, as do the treatments you've been offered.

I am on pregabalin, it's similar to gapapentin. It can be difficult at first but most of the side effects wear off after the first weeks and I do find it helps with the pain.

If you have a diagnosis it will help you to apply for PIP - but as Bananas5 said you really need help with the form. There are several groups that offer advice on how to describe your symptoms and their impact, how to appeal when (not if, most of us are turned down at first) you are turned down and may even offer to accompany you to your PIP interview and tribunal hearing (I used to do this).

[johnsmith]

See an Alexander Teacher. Muscles have an impact on how you feel and how well you function. Physiotherapy is one size fits all and my experience of it is that it has no interest in how you do exercises only that you do them. You need to study how you do things and get appropriate help to improve how you do things. Hence the suggestion of an Alexander Teacher.

Worth getting a McTimony chiropractor to check you over for a second opinion. The medical profession does not recognise problems due to micro cramps.

Hope I have been able to be helpful.

[Mary-intussuception]

Hi

Sorry for all you've been through.

I was wondering what strength codeine? If you were prescribed the high dose of 30/500 x 2 then they would knock you out. The 15/500 might have similar affect. Have you considered trying a low dose? Either 2 x 8/500 or just one plus one plain paracetamol. You could also take Ibuprofen 200mg tablets (after food). This is a good combination pain relief for short term and available over the counter.

I hope you get some help soon and the pain management team can help.

Another thing you may wish to consider is applying for a copy of your hospital records.

Sorry you had to give up work. I lost two good jobs to ill health.

You are not a burden - You are Precious

Sending Love & hugs ♡

xXx

God Bless x

[Lizzylily]

I feel for you so much ive been through all that for 12 years it depresses you so much when they say nothings wrong like its in your head makes me so angry but you have a light at the end of the tunnel pain management is excellent they really listen and understand and will try everything until they make your life easier and as pain free as possible i wish you all the luck in the world dont forget your family loves you it helps to really talk to them sometimes if your like me you probably bottle it all up so you dont put on people that's not the way if they're a part of your pain they understand it better there are so many people out there like us it's about time they studied it better all the best

[Juneswoon]

Sorry to hear you are suffering with so many problems.

Hopefully the pain management will look at your symptoms and be able to help. I have no answers but good luck x

[Casperam]

I’m so sorry your going through so much pain and discomfort, it’s awful when no one understands or can see your pain. I’m attending the pain clinic atm and I have to say I have been very impressed. They can’t help me to rid my problems but they are going to learn me how to live with the pain. Obviously I would prefer no pain but seemingly that’s life. Take care and go to the pain clinic they are fab. Big hugs xxx

[mle121]

So sorry to hear about your situation, I can really sympathise for you. Like you I am unable to sit or stand for long so I have Varidesk at work. It is brilliant you can raise and lower it so that you can keep changing your position. I acquired it as a 'reasonable adjustment' under the disability discrimination act so there can be a solution to finding work if you ask for it. I do hope pain management can help you, they have been great with me but it is a long road to follow. Good luck 🤞🤗

[Bevoly]

HI. After being diagnosed with severe rheumatoid arthritis in 2010 by 2014 I felt I was going to live my life as a disabled person with no job and feared I would not be able to pay my mortgage. I was on the road to taking disease modifying drugs and by 2015 I was in hospital with a bad reaction hearing drs telling me there was no alternative but a liver transplant. I disn't need it as the steroids they gave me kicked but i was in hospital for over a mo th with 100 pcent acute liver failure. my liver recovered. I then decided no drugs would help and joined a gym, registered with my local NHS weight management programme. In Croydon it's called Livewell. I got therapy from their counsellors and I read everything I could online about alternative treatment for my condition. I ignored the drs advice to take more disease modifying drugs and took the minimum amount of steroids and pain killers. The drs sent me to see psychological therapists saying I was damaging my health refusing recommended drugs. I lost 5 stones with my Livewell Co ordinator which included joining weight watchers. I'm not perfect and gained a stone and a half. To date yes I have pain daily as I will always have rheumatoid arthritis but my muscles have developed so well I manage the pain and I can enjoy my life doing what I can and not what I used to do. Instead of going out every weekend i can now only managw every 8 weekends etc. I went zip lining over water falls in Jamaica recently. 4 years ago I would never dream I could climb the mountains to zip anything but my handbag. My depression which i had pre and post diagnosis is managed with excercise yoga and pilates. It's dark when your in pain but all I can say is keep on hoping and praying and doing things yourself as sometimes the drs can't help us no more and we need alternative methods to help us. I am now vegan which helps reduce my inflamation. You won't be as active as you were before injury but with hope and self improvement you will get to a stage where you can go to bed feeling you had a good and eventually great day. Our conditions are different but I hope some of my experience can help you to improve your condition and mobility. Your not alone we are in our hundreds and thousands so please never feel your alone. My motivation was "I don't want to end up in a wheelchair" and so far I'm keeping up that promise. I can't run but I swim, lift weights and do cycling in my gym. Gym isn't for everyone but I believe eating right and moving around right helps improve ourselves. For me cycling helps my arthritis in my knee. I pray and hope you find something alternative to help ease the pain. Mindfulness has a lot to do with my own improvement. Take what you can from the pain clinic and physiotherapy. Sometimes a second opinion may help. All the very best and I hope you too can prove the drs wrong and get better on your own or with minimal medical support.

[craftyvonnie]

thank you all ive read all your comments it means a lot more than you realise xx