Hi Les
Totally agree and thanks for sharing.
Have a good day.... x
Hi Les
Thanks for your informative post. I was recently awarded HRMobility and MRCare after filling in my DLA renewal, (previously getting LRCare alone) after 2 yrs. I am still fighting for the Mobility component for those 2 yrs and its given me no end of anxiety and depression, causing heightened/increased FM symptoms, exasperation and dispare.
I was refused any benefit at all, initially but I ploughed on because of reading articles like the ones you've referred to and others that I've read online about our illness and its effects and the affects I was suffering.
I know first hand how hard it is but would say to those on here, thinking of applying or appealing, take heart and take all the help you can get.
I will update you in regard to my ongoing appeal.
So thank you for the encouraging info and advice.... be happy and well, Les.
Angie
Hi shelagh Im with you so glad its gone cooler, the heat was to much for me, hope you have a good week and your not in too much pain. take care gentle hugs
Hi Les,
I am just writing out my form for my appeal for PIP, I am quite new to this site and still trying to find my way around this, is there anything you can suggest when writing my appeal or direct me to where your previous comments are.
Many thanks
morning Bronwyn How are you hope your not in too much pain. Fibromyalgia needs to be put out their as many people have never heard of it. drs specialists nurses the wider public need to know about fibro and how it affect peoples lives and the different symptoms it throws at us. Its not a widely understood condition more needs to be to done in it being researched and finding a cure for it.Im not sure a cure will be found in my life time.take care gentle hug
Hi Shelagh,
I actually wrote this earlier, but a virus changed my DNS settings so it would not send, it looked like someone was interrupting my internet on this machine. Anyway, this is what I originally wrote earlier today, before I was interrupted
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Many councils still have a Welfare Rights Department, do not get this confused with Welfare Reform or Welfare Reform Funds.
Welfare Rights will help you in many ways, if you have one in your area, they are rated better than CAB in many ways, due to the way both are funded.
Welfare Reform Funding is a totally different area, this is where the current government is planning to hit people hard during this week’s budget. The public is fighting hard to overturn many proposals already put forward by our government. There are many websites that you can sign to overturn the proposed changes during the budget this week.
You may think what is the point of signing an online vote against proposals. Well, one was overturned last week by 38degrees - they had over 1/2 million public votes and donations to place advertising in papers which would counteract a forthcoming proposal, last week this was Child Tax Credit. Now, this is why back-benchers and other MP's did not back George Osbourne's Child Tax Credit proposal. There are many backbenchers that do not agree with proposals, and by placing full page advertising in many newspapers does cost money, it also as a positive impact on Parliament.
Welfare Reform Funds are available, but are dependent on your local council. The Government may state one scheme, but many councils vary in the way these funds are made available to the public. If you are in receipt of ESA within the support group, normally you are not entitled to this funding.
Cooler day Shelagh, have you seen the weather forecast!! We are nowhere near the hottest day or peak yet - they have forecast temperatures higher than we had in 2003!! I wish I could have a great day, Shelagh - even with my wife helping me it takes about 30-45 minutes just to get out of bed!! I have a hospital bed which my doctor got me via the District Nurses, yes it's one with all the remote control options. In theory it should be easy to bring the back up, so I am the sitting position, but with me, my muscles seize up overnight and on the first night I got lodged between the bed and the wall, so they fitted bedside rails so I could not slide sideways! I have to phone the district nurses again today, to attach a drop-rail so my legs stop falling out sideways! My wife and I, always slept in a double bed, these days that is just impossible - it got to the point where I had my son and wife actually pulling me up into the sitting position, but even that was difficult for my wife, who is quite short, and I stand over 6'1" - hence I tower above everyone in the house. Once I am in the sitting position, time for compression stockings to slow down swelling in legs, ankles and feet - putting on these really hurt, because even though my legs have been elevated all night, a slight touch and I am in agony.
I have learnt one thing, no day is ever the same... some are worse than others. The worst is going to sleep at night then waking up in hospital, I have no recollection of how even got there, but it's mostly down to Functional Episodes! Over the years I have got used to it, I have no choice really.
Anyway, have a nice day, cooler here today - but it’s raining! Typical English weather. lol
Regards,
Les.
Hi Lindsey,
Check my post up further on this page you will see Welfare Rights Department mentioned where I was speaking to Shelagh.
A better discription is here which I wrote:
Advice on Applying for DLA (Disability Living Allowance)
https://patient.info/forums/discuss/advice-on-applying-for-dla-disability-living-allowance--313511
The PIP form is basically the same, apart from a few questions that differ. I think I have a PIP form here somewhere, I will look it out.
As for finding my other posts there is many, and my posts are usually very long with a lot of content. I'll have a look around and see what I can find.
Regards,
Les.
Thanks Les, you have reminded me that there are a lot of people worse than me, sometimes I need a reminder. I used to teach riding for the disabled that was an excellent reminder but these days I don't see anybody. I've used welfare rights before they are excellent and we do still have one in this area. I am helping someone through the maze at the minute, I'm trying to get her to welfare rights but she is despondent after she was turned down for PIP for her son with Down's syndrome. Another who is in a worse position than me!
Shelagh x
Hi Angie,
You're welcome, I like to help people and because what I have been through in my life, I have picked up a lot on laws and acts.
I do not have Fibromyalgia myself - but I spend much time in and out of hospitals, visiting the doctors, consultants, having injections, 30+ tablets a day, etc Yet, you can guarantee if you are feeing low, that there is always people worse off than yourself - I did on here, with the same condition as me, but not the same additional disorders which complicates my case even more.
A split second accident, ended up with me having my head twitching and pulling constantly to the left and down. My own GP at the time, even checked my arms because he thought I had taken illegal drugs, cheeky sod, never touched drugs (illegal ones in my life!). He said I do not want to prescribe you anything, until we know what is causing it. Well, I was passed around the country in different hospitals, keeping me away from other patients, because no one knew what was wrong with me. Then I got transferred to The Queen's Hospital in London, many tests were done. I then met a Neurology Professor Dr. David Marsden from the USA and his team, 18 months later I was diagnosed with Focal Segmental Dystonia, then Torsion Dystonia, then Cervical Dystonia (the neck, not pelvis as most people think!) then last year it was finally changed to Generalised Dystonia, in other words all limbs affected. There is no cure, well I say that our government state theres a high recovery rate, when I looked in to it myself and in the BMJ, the success rate is only 5%!! Says it all about our Government!! I have even met one guy that had the brain operation, he was much worse after having it done, and was paid a high compensation for incompetence.
I thought having Dystonia was bad, but because it is nerve disorder.
I got Epilepsy, Functional Episodes and IBS!!
In March this year after 7 years in remission, I was finally given the all clear from cancer.
And if all that wasn't enough I got rushed in to hospital with horrific stomach pain, at first doctors thought it was my appendix. But it was too low down, and they said it seems to be coming from the intestine. Then they said we need to have a look inside you, that meant
surgery. I was in surgery for over 6 hours, eventually I come around but was in so much pain, I was on Morphine and had an Epidural in my back. What had happened was over 50cm of my intestine had turned gangrene, so basically I was dying from the inside out, in medical terms it is called a 'Small intestinal ischemia and infarction'. Two days passed and instead of getting better I became worse, the pains become worse and then I could not keep nothing down not even medication, and I started being nauseous with loads of bile. By this time, I was rushed back in to surgery, I didn't even have time to sign the consent form. The surgeon phoned my wife asking if she would give her permission for them to operate ASAP, it is an emergency that we need your husband operated on, and he is unable to sign the form himself. Of course she said 'Yes' to the surgeon and said she would sign it, as soon as she got to the hospital. What happened to me was part of the gangrene intestine had touched my liver, which had also started to die off, this was touching more of the intestine which was cut apart again and removed, the liver grows back anyway (good job in my case!). I spent nearly a month in hospital with that operation being done, and seen District Nurses every few days to clean the dressing. It took me over 10 months to recover properly.
That basically, is what is wrong with me, majority of the time spent in a wheelchair. The Neurophysiotherapy is working slowly, I can manage a few steps on a good day.
Many people say why don't you apply for a holiday... well, if it was not far away, and had bidets or bio-bidets I would be fine. But I'm nowhere near a coiastal resort...lol
We have to take everyday as a new day... hoping, something new will happen, well we can dream I guess! lol
Regards,
Les.
Hi les
today after over 10 long years I was officially diagnosed with fibromyalgia it was at rymatolagy who I've never been sent to in all this time I was sent to pain clinic few years ago , they put me on lidocaine patches and gababentin but didn't even touch me , before then it was like I was making it up but my dr put me on tramadol so for over 8 years I was on them , I totally agree how difficult it is to be listen to and diagnosed with being miss diagnosed a few times thanks for your post any advise please help as new to forums what I feel helps me a lot it heat hot hot baths ease my pain at time they today have referred me to get acupuncture and to go in the hydra bath and thanks for listening.
Hi Dean,
Well, Dean your story doesn't surprise me at all. Fibromyalgia is either diagnosed by a Neurologist or a Rheumatologist. The problems we have these days is, more so with Fibromyalgia is getting it diagnosed correctly. Both of the aforementioned are quite capable of diagnosing the disorder, but what throws many specialists 'off-track' is the fact, certain symptoms could mean some other prognosis, hence the diagnosis ends up being wrong. I really need to put up some links to specific websites, showing what various pains are, most people think pain is just pain, that for a start is wrong, imagine treating everyone who had pain with the wrong type of painkiller, rather making it better it could becoming worse, or the painkillers you take the more your body becomes immune to them, again the wrong way of trying to remove pain.
What I can do is write a large article, not just any old article, but one that explains things easier for people to understand. It is so obvious that ATOS has no idea when it comes to Fibromyalgia, apart from it is back pain! How to lose a case before you start!
Dean, your more than welcome on these forums - there is many people just like yourself on here. They could tell you there stories and how they cope from day to day. I noticed it attracted a lot of attention, hence why I have stayed and answered most questions, think I missed a few, but they will be answered like the rest.
Pain Management Clinics to me are basically a waste of time, I spent 12 months going back and forth to one. I have been on Tramadol, at first only 50mg before bed, basically it was for killing pain in my neck, shoulder and back.
I was gradually upped to 150mg, however this dose was split with 50mg in the morning and 100mg at night. This is when the problems started, I kept feeling nauseous after taking 100mg of tramadol at bedtime. So, I contacted my doctor to ask if I could split the 100mg to around half the time in the day, well this stopped the nauseous feeling, but I had pain come pack in my spine at nights, keeping me awake again. So, then I was given Amitriptyline before bed and told to take Paracetamol with the Tramadol doses at night and in the morning. This now was getting out of hand, and it started causing Epileptic seizures to become uncontrolled!
At this point I was referred to the Pain Management Clinic to remove the Tramadol and Amitriptyline.
They tried putting me on Gabapentin, these are okay for peripheral neuropathic pain, but no where near as strong as Tramadol and Amitriptyline, which work together. Apart from that, the Gabapentin also caused diarrhea, from my IBS!! Normally, they wouldn't they would have the opposite effect and cause constipation.
Nothing with me is easy!! I tried Gabapentin for nearly 2 weeks, which played hell with my stomach operations, so it was all swapped back.
So, there I was back to square one!! Again.... Tramadol, as you probably know is well known for causing sleep at any time, there was me with very ominous side-effects.
At this point, the Pain Management Clinic had done nothing, and were not going to change any other medication because I am on 11 others a day at different doses. So, my own doctor had an idea - take me off the 150mg a day (bearing in mind this medication can cause seizures), and up the dosage to 200mg of Tramadol (it would of been 75mg x 2, but they are not available in the UK), but put me on SR (Slow-Release).
So, now each morning 100mg of Tramadol SR, 2 x Paracetamol and then at nights 100mg of Tramadol SR, 2 x Paracetamol and 2 x Amitriptyline. This keeps my pain level low enough throughout the day, and aids sleep at night - the Slow Release Tramadol keeps the same level 24 hrs a day, which I am happy with.
Many people say Tramadol are addictive, I've never had a problem to be honest, people say I should be wary on a Class drug, but if the slow release is enough to keep pain at bay, then I don't mind. The Paracetamol work well with Tramadol which is why I am on them, the only time I have to take 2 additional Paracetamol is before Physiotherapy, so they can stretch my leg muscles in to the correct way, without causing me too much pain. That is okay, until I get a dam cramp in my calf muscles, then that is REAL pain!! lol
Thank you Dean, for bringing your story to my attention - I can only imagine what you must have been through in the past 10 years, hopefully we will find some way of making this disorder more aware to not just families, but the public as well.
Regards,
Les.
That's interesting Les, Tramadol make me I'll, I take Dihydrocodiene with Paracetamol, Amytriptyline 50mg at night, Pregabalin 100mg at night and Butrans patches. The Gabapentin made me really ill, my blood pressure plummeted one day at work, I was so ill I had to let somebody drive my car home, nobody drives my little car, she's precious. With regard to addiction to painkillers, I've been told they aren't addictive if they are taken as painkillers and not for recreation. I think it was one of the drug team I worked with who told me that, whether it's true or not I can stop taking them if I don't need them and don't get any side effects. I've been referred to the Pain Clinic, I used to manage their clinics so know the team well, the plan being to reduce the amount of painkillers I take, we'll see.
Just reading your bit about holidays, there are a lot of places specifically for disabled holidays, we visited one in Grantown on Spey, it was nice with all the facilities, hospital beds, Bidets, lifts etc, it was a hotel, wouldn't be my thing but it was 'nice'. Now at the other end of the scale there are bungalows in our village which have all the facilities mentioned above.
Hi Les,
This is a great post for anyone claiming PIP, which I am in the process of.
I was finally diagnosed with FMS in May after years of suffering with most of its symptoms and widespread pain for the best part of a year.
I work, although I have had to reduce my hours by more than half and am currently signed off again. Whilst I was still at work, I was having to get taxis on many days due to pain and as my wages had obviously reduced this became expensive. Someone suggested claiming PIP for additional help (also need other help with care etc)
Unfortunately, I did not think to check out how to complete the form and filled it in and sent it off. Sods law that I started finding all sorts of info after ther fact
Anyway, I have my f2f at the end of the month and I have been lucky that a guy from a support team I am working with for something else has said he will accompany me to the f2f and he put my mind at ease that the assessors at this particular assessment centre are friendly.
After being told for so long that my illness was "all in my head" and reading that, to many health professionals the illness does not exist, claiming a benefit is daunting - after all if your own GP doesn't support it why would someone who is trying to save the Government money agree you are ill?
I have also just had an overnight sleep study and it would appear I also have OSAHS (although this was only mentioned on the discharge letter and I am awaiting a consultation for the results)
Anyway - after going all around the houses lol, posts like this are invaluable to sufferers, especially those who aren't used to the benefits system, and although my support worker believes in fibro, I will be taking this info to my assessment
Thanks again
Hi shelagh what do I google when looking for holida that is specifically for disabled holidays I didnt know their were places. How are you today hope your not in too pain take care gentle hug
That is exactly my problem Shelagh, changing any of my medications can have major effects on me. When I said to my Doctor that Gabapentin caused Diarrhea, she said that was not possible - I said well that's what I thought, until I read in rare cases it does have the opposite effect, so it was possible but classed as 'rare' and I'm one of those rare cases! Typical...
Pregabalin also has the same effect with me, because I was supposed to be taking Gabapentin and Pregabalin, both work better with Epilepsy, but if your body rejects them, I had no choice but to stay on Tramadol.
You mentioned Dihydrocodeine, well guess what I cannot take any medication with with codeine in, it doesn't cause Diarrhea, but I end up with severe constipation.
Tramadol are brilliant as a painkiller, I never take over the dose I am supposed to prescribed anyway, besides for me to do that would be impossible. My wife has to sort all my medications out, I cannot be trusted with which tablets are to be taken and when. It doesn't help when I have memory problems, I seen my Phychologist this morning, and now they are arranging a meeting with me, my Neurologist (whom is the President of British Neurology Dr. Geraint Fuller), he does NHS and Private patients.and my Pain Management Consultant, because of memory issues whether these are medical related or I have some other underlying problem, so I am hoping it's just medication related.
I have have many people that come on here actually asking how to get hold of Tramadol for recreational purposes, because their doctor prescribed them with a box of 100, and they took them all in a week! That to me is bad.... Course people phone their doctors asking for a repeat then cannot understand why they are turned down.
Trouble is we all differ, so tablets work with some people and not others, it's like Fibromyalgia, there are many variations of it, which makes it confusing.
I could tell you a medical term of one such disorder that thousands of people suffer from, and they would be 'shocked' beyond belief. In some cases it is part of Fibromyalgia, yet it is rarely associated with it.
Regards,
Les.
I do not know if you know this but if you are on either the top mobility rate of PIP or DLA, and have a vehicle on the Motability Scheme you can claim a voucher for 50% off any holiday booked with Haven Holidays.
Many people do not know what entitles them to what, which is a shame really - again it is down to awareness, and the lack of, which fails so many disabled people.
Thank you les for letting me know much appreciated. I didnt know you could do that their certainly is a lack of awareness anout it. many thanks kaz
Hi erykah71,
You should have found me first - I have a huge wealth of knowledge! And, filling those forms in, I helped 5 people on these forums this year, all 5 ended up with Full PIP on both components and none of them had to appeal, the periods varied from 3 to 10 years, but this part relies heavily on your disorder and whether or not it is progressive.
Fibromyalgia is not a 'progressive' disorder as such, but it can feel that way to the patient, if asked they would probably say 'yes'.
To a person, say in the street, looked at a person with early stages of Fibromyalgia they would not even think there was anything wrong at all.
I had to laugh at this part "illness all in your head" - if I could post some links, you would find out some very interesting facts by a Consultant Neurologist Specialist Dr. Jon Stone. He has some amazing articles online, that if you played I have watched, you would understand more about that statement, to ATOS and their so-called Health Assessors they would be totally shocked, if they were shown the video - it is a true reflection of "Pain", but not how our Government depicts pain, at all.
There is much more I could say, I think what I will do is put up a page of various links not just to interesting documents, but much more. Alan, the moderator I still need to give him a load of information that would benefit many people on this website.
Regards,
Les.
Hi Les63
I have been reading a lot of your blogs on this site and I wondered if you could kindly help me fill in my husband's PIP form?