Fibromyalgia Action UK
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At last - recognition of our illness - DLA appeal won whoopi!

Hey all,

Just had to have a shout out, because on Saturday 22nd Sept I finally got the letter, that I have been waiting for - after 3 attempts I was finally awarded DLA at lower rate. I still intend to appeal this, because frankly I feel that I had such a strong case, it was cheaper and easier for them to award me, than go to tribunal. I think that it was down to one of the last letters that I wrote, which may have overturned the decision. I have attached a copy of it, which was originally sent to appeal my ESA WRAG placement, and adapted it for DLA application. If anyone feels it could be of some use, please feel free.

Job Centre Plus

Hyde BC

Pittman Way


PR11 2AS

15th May 2012

To whom it may concern

Further to receiving the written medical report, which placed me in the Work Related Activity Group, please take this letter as confirmation that I wish to continue with an appeal against the decision.

•It is a huge assumption that my musculoskeletal & mental health problems ‘might improve with treatment’, as so far after nearly 9 years of medication and counselling etc. my depression has not really got any better. Obviously there are times when my mood levels have got better, but this has only ever been temporary as on the whole I am usually flat and below flat. If there were a magic potion that I could take which would make me feel better, then I would be the first to sign up for it. I have detailed how my depression affects me on a daily basis later in this letter.

•My musculoskeletal problems are here to stay, I have been told this for the last few years. Surgery is not an option as it would achieve nothing, acupuncture did not work, and the plethora of painkillers that I take, only manages to dampen the pain down. I have been in constant pain in my neck, right shoulder and arm for the last 3 ½ years, and have been told that I will pretty much have to live with the condition for the rest of my life. It may possible ease, it may stay the same or it could indeed get much worse. I have detailed how this illness affect me a daily basis later in this letter.

•The report does not mention the fact that I suffer with Fibromyalgia, even though it has been listed as one of the illnesses/disabilities in the ‘about illnesses and disabilities’ section of the application. I have only recently been diagnosed with this condition (Jan 2012), my understanding from the Consultant that saw me; is that I have been suffering with this for many years. At some point in recent years, something, possibly stress or anxiety may have ‘triggered’ the full-blown impact of this illness. I cannot understand why this information was ignored, as it possibly the worst of all my illnesses to live with. Since my diagnosis I have sought out more information, and have been amazed at the number of forums, discussion groups and people who are also affected, and who like me struggle every day to deal with it. I have detailed how Fibromyalgia affects me on a daily basis later.

Date illnesses diagnosed:

Fibromyalgia (chronic pain) formally diagnosed Jan 2012

Musculoskeletal problems: 2008.

Depression & anxiety: Formally diagnosed Aug 2003.

Pending appointments:

I am currently waiting for the results of an MRI scan from the Rheumatology Dept, at Southampton General Hospital. I have just had an appointment with a psychiatrist at Cannon House today, and again I have mentioned my need for counselling, an I waiting for confirmation of a referral.

Details of medicines taken:

Copy of prescription list attached.

Activities affected by my conditions:


I have suffered with this illness for most of my adult life, but it was only diagnosed recently, after several visits to my GP. Everyday, I suffer with pain throughout my body; this condition means that my muscles are constantly tense and therefore I am unable to relax. It interferes with my sleep pattern, so I wake still feeling tired and worn out.

The intensity of the pain caused varies everyday, and can be measured by what is bearable and what is not. Every day is different, there are days when I can walk without too much pain, and there are others when I can hardly stand. My muscles are always painful when touched or stretched. This affects my entire body, so one day it might just be my in hands or face, the next it could be my hips, shoulder and ankles; during a pain flare-up it is everywhere. I also suffer from migraines on a regular basis, and these can last for days. FM is not curable and can only be treated with painkillers, which only proves to dampen the pain down. They do not help during a pain flare-up, which happens quite frequently.

I do simple yoga stretches on a regular basis, in order to keep my muscles as strong and flexible as they can be; but I still experience pain while doing it. It has meant giving up a lot of things I used to do, such as dancing, gardening and going on walks. It is a great cause of concern for me, and I worry most about losing any more dexterity in my hands. Having to live this condition naturally plays major part with my day to day mood.

Dr Darshan Jagannath (Rheumatologist) feels that this illness may have also caused the Musculoskeletal problems that I experience in my neck and now both shoulders. Which is why he referred me for a secondary MIR scan; to see if anything had structurally changed since the last one in 2008. He has also suggested to my GP, that if all medication fails, then perhaps I should have an appointment for physiotherapy.

Musculoskeletal problems:

I have always had problems with my neck and right shoulder, however about 31/2 years ago, I my first major pain flare-up. After several visits to my GP, because of the severity of the pain, I was eventually referred to Moorgreen Hospital, where I was examined, sent for an MRI scan, and then received a six week course of acupuncture. Unfortunately this only had a short-term effect. I still have these pain flare-ups quite frequently, and it affects me in my neck, shoulders, arms & hands, my chest and across my back. I was then referred to the ‘ADAPT’, Pain Management Clinic, for a 12 week programme (Jan 2011), to get help with coping strategies with this problem.

This problem means that I cannot turn my head too far to the left or right. It causes pain down the back of my neck to upper spine, so at times it really does feel as if I am holding my head on my shoulders. My neck needs to be supported when I am leaning back or sitting as a passenger in a car, so when taking my medication holding my head back again causes pain. My neck muscles are always tense and painful, and it feels like I have something hard protruding into in my throat.

I have found it very difficult for some time now (years), to be able to hold a pen or pencil to write, even doing my own signature can be a challenge. If I have to complete forms, I will always use an online or downloaded copy if I can, because otherwise, my writing becomes completely illegible. It usually takes days for me to complete an application such as the ESA50 or the DLA1A. It has also affected my independence and personal social interaction, in the fact that I can only drive short distances. So I can no longer visit friends and relatives further afield, unless my husband drives me. On the whole my arm muscles are so weak, and my right shoulder has dropped by at least 2 inches below my left. When I look at myself in the mirror, I can see that my right breast has dropped, so generally I feel lop-sided.


I have been treated for depression for nearly 9 years, but I feel that I have again suffered with it for most of my life. I have received counselling; which was arranged through my then employer (Southampton City Training) for 6 weeks, but that only made matters worse. Through my GP I was referred to attend a Cognitive Behavioural Therapy programme, which also didn’t really hep me. This led onto counselling from the Psychotherapy Unit at The Royal South Hampshire Hospital, which lasted for 18 months for which I found very beneficial. I also attended a 12-week, ‘Mindfulness’ programme, which was about thinking and being in the present, meditation and breathing exercises. This was a good programme, however, because I cannot physically relax, it is very difficult for me to practise. This was all happening while I tried a variety of anti depressant tablets, which I am likely to be on for the rest of my life.

I am still under review/care plan with both my GP and a Psychiatrist at Cannon House, on a regular basis, to check on the success of prescribed medicines, my general well-being, my mood levels and to monitor my blood pressure. Depression has affected my life greatly; I have lost my confidence, self-esteem and my energy. I have difficulty trying to concentrate for long periods of time, and I am easily distracted, I find myself doing a number of different tasks at the same time, because I have become so fidgety and cannot settle. I have openly said over the last few years that I help my husband with the administration for his business. This arrangement though unpaid, suits me, because I do not have to leave the house unless for errands, and I can work at my own pace and time. So if I am feeling desperately low, then I have control over what and when I do things.

I lost what spontaneity I had years ago, and as a result of this I cannot cope with change easily. I cannot do something or go somewhere last minute, because it makes me feel very anxious and uncomfortable, and I would rather not go through that. I have a few places that I am happy to go on my own, but the majority of the time my husband is usually around. If I am on my own, then he will contact me by mobile just to check that I am okay. I cannot be in large crowds, as I get very nervous and anxious, and still suffer with panic attacks; which can be triggered if I get too anxious. If I have to go into town, I find myself racing around at speed (to me), because I just want to get what I need and get out. I always pay physically for this later, but I have no choice, because this, and my other illnesses have already significantly restricted and impacted on my life.

Help that is needed:

I am usually able to bathe and shower on my own, but there are occasions (during pain flare-ups), when I do need my husband on hand to help me in or out of the bath. He will also help with drying me and applying my medicated lotions to my skin. I normally have difficulties raising my leg over the bath to get in, and due to my muscle deterioration in my upper body strength; it can be very difficult to get out.

I have had to adapt the style of clothes I wear, because I am unable to do fastenings, which are either at the back or to the side. It is always uncomfortable to dress, and when I have flare-ups I am unable to put things on or pull them off over my head. My manual dexterity also means that sometimes I cannot due up buttons.

I find it uncomfortable to sit or stand for long periods of time, again to pain in my upper body, hips, legs or ankles. This makes very fidgety, because I a cannot relax or settle. I am unable to sit of my sofa for long, to watch TV in the evenings for the same reason, and as a result of this, I sit mainly on a high stool in the kitchen.

My main difficulty with moving around in or outside, is that I have a tendency to lose my balance because my hip or knee just gives way on me, or I feel intense burning pain in my lower back, hip joints and ankles. It is worse if I am walking on uneven ground, inclines and going up and down stairs. On the whole when I am at home, I unconsciously hold on to things to give me support, so that I can move more freely, but I am forever bumping into things and hurting myself. When I am walking, I have it take it slowly, and stop often, as I get a pain in my hip joint. This has led to me developing a noticeable limp after a short while, and to me it’s like my right leg has become shorter that my left.

Fibromyalgia causes sleep problems, which means that I do not enter into a ‘deep sleep’ and I am constantly waking up during the night, because of pain or discomfort. Due to this, I awake tired and fatigued, as if I haven’t slept at all, so during the day I tire very quickly and even simple tasks can wear me out. As I am unable to lay flat on my back or side to sleep, I have begun to use additional pillows to prop me up into an almost sitting position in bed. This has help enormously as it means my head and neck are supported. FM can also causes severe migraines and headaches, which affect my vision so that I cannot focus on something or be in bright lights.

The pain in my neck and shoulder has for years has meant that I have lost the ability to write for any length of time; because gripping a pen causes pain and muscle spasms in my hand. This also affects my ability to carry or hold heavy items, such as shopping bags for long. I also have difficulties around the home because I am unable to use a vacuum cleaner or mop the floors, and so have to rely on my husband to do this. I find it difficult to iron clothing, again due to the weight in my hands. In the kitchen, I cannot peel vegetables or cut dense meat because I cannot hold a knife comfortably to do this, without my hands seizing up. This also means that when I eat, food has to be cut up so that I can eat with a fork or spoon.

Any aids used:

At present I do not use any aids, mainly because I am concerned that using a walking stick or crutch will add more pressure to parts of my body that are already affected with pain. I have recently registered with Southampton’ Adult Care Services, and have been registered as disabled received my Yellow Card; and they are arranging for an assessment at home to determine what aids/help are needed. I have also applied for a Blue Badge and Disability Living Allowance.

Details of any falls:

Most times when I stumble or fall, I am able to right myself. The only occasion when I should have sought medical attention happened a few months ago. I generally do yoga stretches before I go to bed, so that I can keep my muscles flexible; but while doing a forward bend I lost my balance and fell forward. As I went down I hit my head and right cheek on the dressing table, and was shocked and dazed for a short while. Luckily my husband was in the room and helped me up on to the bed. In spite of the pain, I was too tired and fell asleep. The next day, my face was naturally very swollen, but my swellings did colour or my eye go blood shot, all I had was a very painful headache. In hindsight, I realise that I should have gone to the hospital to get checked out, as the pain in my forehead and cheek still ache.

The list of professionals to contact is still applicable, but at least by now if approached, their reports may be more up-to-date. I hope that this information is enough for the original decision to be changed, and that I will be placed in the support group.

Now that's sorted, I just have to wait for the outcome of my ESA appeal! :-)

Good luck to all who are still waiting.

Sharolina xx

9 Replies

yes yes yes you go so happy for you and keep up the fight it makes us all wanna fight that much harder for us too.

so very happy and may it continue xx.

p.s wot a brilliant letter.


Wonderful news

Congrats VGx


I'm just considering whether to appeal my DLA decision because I was awarded LRC and LRM based on my mental health problems . They have - for the second time - ignored ALL symptoms that stem from Fibro . This despite a similar letter to yours that I sent when asking for a reconsideration.

Seems to me that despite the World Health Organisation recognising Fibro as a disabling condition, the DWP certainly don't.


That was very articulate and well written. Well done on your small victory and good luck with your appeal.

Storm x


Thanks so much for sharing this with us and congratulations on your victory! Jane x


brilliant! well done.




WOW what a brill letter before i read this i was thinking should i appeal ? what do i say in the letter, iam just so confused at the moment the thought of writing a letter was so daunting till i read yours, ihope you dont mind if i take a few pointers from your excellent letter when i feel ready to sit and write a one. gentle hugs paula x


Thanks to all of you that have left feedback about my letter, I hope you find it useful and maybe a bit inspirational. I know it's hard for all us when it comes to dealing with red tape, it took me a good few days to construct the letter, and I know there is a lot more I could say. Please feel free to use the contents for your own appeals, but obviously personalise it to your own issues. It took over a year before I finally reached this stage, so I suppose the only message is don't give up.

Sharon x


what a brilliant letter thanks for sharing and well done on being so thorough your letter. My appeal for ESA is in October and i had all about give up and resigned myself but this has given me some hope and pointers for what i could put in a letter. Thanks lesley x


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