Where to from here ?

[zimbabwemac]

As someone who has previously proffered advice, on this occasion I need some from you guys. I have longstanding acute pain issues, spanning the last 11 years. Following two serious car accidents, the pain across my limbs increased significantly over time and I went from the maximum doses of Tramadol and Gabapentin to Zomorph as well as Cymbalta, Amitriptyline and smaller doses of Gabapentin. I was diagnosed with fibromyalgia about a month ago. I have had five operations on my knees, including Total Knee Replacement of both my legs, three operations on my back, including a spinal fusion and a laminectomy and five operations on a Weber C fracture of my right ankle. I successfullyn appealled against an ATOS medical investigation of my condition at a Tribunal in 2013, but received no Disability Benefit, despite being unable to work, because of the pain, poor sleep patterns and exhaustion. My question relates to all of the above conditions, in terms of PIP and financial support. I don't know whether I am entitled to PIP/DLA, because although I am able to walk some distance with my walking stick, I am continuously in pain when I do so. Would really appreciate some feedback please. The other issue is that my GP is keen for me to come off my Morphine and my Gabapentin, for cost reasons (to his budget) than my own health and has also mentioned coming off my statin, because I smoke and he feels that as I smoke, the statin will not help me. The last time I came off my morphine, I spent nine days in hospital, as my surgeon (at the time) just suddenly stopped my morphine after my second knee replacement. Would so much vale your advice please.

[Betty67]

Sorry you are having to cope with so much, I would suggest that you do apply for help with PIP/DLA. Sounds like you should qualify but definitely won't get it if you don't apply.

Sure other people will offer more support, gentle hug

[Shazzzy]

Definately apply for pip, but use an agency like cab or dial to help fill in questionnaire. This way more likely to receive it without resort to appeals. Cant help with your pain stuff sorry. The pip application is about your quality of life, how your pain, exhaustion, confusion etc limit you and whst you are able to do. All the best

[rosewine]

I was so sad to read your post as you seem to have gone through so much with all the operations, ensuing pain and changes in medication.

If you can as Shazzy says try to get a Benefit Agency to help you with your application as they have a way of wording the replies to fit in with the criteria. If you can't get help the Benefit and Works site is certainly worth a look at. I subscribed when I needed to fill in ESA forms for my husband and also when we too had to go to two tribunals and without their guides I am positive we would not have won our case.

I know that my own doctor who is quite young is not at all keen on anything codeine or morphine based for fibro as he actually said it sometimes has no benefit so you are unnecessarily drugging yourself up. I was put on Butrans patches by the Pain Clinic but came off them and have gone back to Co-codamal 30/500 mg, Pregablin and Ibuprophen and Lidocaine patches when necessary and am two weeks into taking an antidrepressant and in fact the pain has not got any worse and I do feel more alive.

I can't understand them trying to stop your Morphine so abruptly as we all know that the body gets used to these drugs and needs a period of adjustment to cope with the changes. I know that now a lot of GP's are managing their own budget they are really reluctant to prescribe anything with a brand name and anything that is expensive I have a feeling that my Lidocaine patches will be going soon.

Please apply for DLA/PIP as from your post I am sure that they would consider your case favourably. When filling in the form remember to concentrate on what you can't do rather than what you can and send copies of appointments, letters etc to back up your case.

Good luck with everything and let us know how you get on.x

[TheAuthor]

I am so sorry to read of your suffering and of your struggle, and I sincerely urge you to pally for PIP and let them decide if your entitled to it. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[zimbabwemac]

Thanks for all of your replies. Historically, I was put on Tramadol for all the pain, but once I was on the maximum dose for that and Gabapentin, I was put on Zomorph. I wouldn't wish to remain on morphine for ever, but every time I try to reduce now, I have terrible bouts of pain, I sweat profusely and become dizzy and disorientated. I have reduced from 160 mg to 30 mg but going lower than this is proving to be highly elusive.

[zimbabwemac]

And just to add to the problems, I have been told that my Vitamin D2 and D3 levels are very low. ( <10 and 24 ng respectively)