Think i may be fibro and considering giving up struggling to work at 30yrs. Help!!!

All my life ive had odd aches and pains. As a child it was considered "growing pains". I have a distinct memory of about 10yrs old and finding it painful to sit on a classroom floor with my legs crossed in a basket or worse sitting on my knees. My tendons in my calves have always been tight. But i just thought that was normal. About 3 years ago i began to develop pain in the sole of my heels when i would get up in middle of the night to let my dog out. This got progressivly worse. After a year and a half i went to my gp.

i was diagnosed plantar fasciitis. This is commonly called policemans heel or fallen arches. This is painful because the achilles tendon pulls on the arch or plantar fascia, in turn causing pain in the heel.

After cortisone injections in the sole of my heels "excrushiating pain!" And physio excersises for over a year i was convinced i either needed an operation to stretch the tendons in both my legs or i was a hypercondriact. At times i have considered if this could be all in my head as its different kinds of pain on different days. Most recently my heels get soar after i walk about 10-15 mins. However with increased tight calf muscles and compensating for how i walj with my feet, my left hit now hurts. My gp says its not my actual hip but the muscle or tendon round the front of my hip/top of my leg. This pain is sharp and piercing. But i also feel a burning cramping pain on the back sides of my hips. Like two specific areas to the left and right of my lower back. Everyday is one or more of these symptoms. Also diagnosed diabetic type 2 and high cholestarol so i generally feel ill a lot of the time too. I have had my current job for a year and a half. I specifically chose a call centre so i could sit and work. But since i started i have had 14 seperate absences. Some of them a week or two. Some of them a couple of months. To top it all off i have had depression since puberty and been taking fluoxatine for 15 years. I have cronic insomnia and have tried sleeping pills but think im more or less immune to them now. Sometimes this constant pain which comes and goes gets me down. As well as this i get constant acid reflux in my stomach as an effect of ibuprofen and cocodamol. And because its so unpredictable i have considered if it is all in my head. Thinking i might actually be crazy. A real hypercondriact feeling pain for imaginary illnesses as this never seems to get better. It just changes day to day.

Dont get me wrong when im off work sick, i can have lie ins, relax at home and manage my symptoms then it does get better. However as soon as i go back to work after just a couple of weeks it flares up again. My employer has refused to drop my hours to part time as i believe i could only work 3 days a week and better if those 3 days were together. So work 3 days and 4 days to recover and so on.

Now im considering leaving my job altogether. Its not fair to keep calling sick as often as i do. To them or to me. Physically, mentally and financially.

So my main points/questions

would i be penalised by the dwp if i willingly leave my job due to this illness?

How do i discuss the possability of fibro with my gp?

am i entitled to state benefits in the uk such as esa and dla?

Is it worth persuing my physio to operate on my tight leg muscles?

43 Replies

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  • Hi yvonnescotland

    I have read your post with a great deal of pain and sorrow. I really wanted to offer you some emotional support at this time but I am truly unsure how I can help you? I am presuming that you are in Scotland (hence user name?). If so, I really do not know how the benefit system works in Scotland. If you are in England however, the system can suspend money depending on what benefit you are applying for. There are no new claims for DLA anymore as the benefit has changed to PIP (Personal Independence Payment), although it is pretty similar.

    I always think that physio is worth the effort as long as you are capable of doing it and it is not doing more harm than good, and only you can truly answer that question. If you have a good doctor that you can talk to why not print off the FibroAction details from the site and / or the NHS Choices website details relating to Fibro and take them with you to see your doctor. If you are as open and clear with them as you have been on the site then I think you will do really well.

    I was wondering if you have any family or friends that could maybe help share the burden with you at the present time? I know from personal experience that the people we are closest to would rather help their loved ones than themselves, as its our nature. I remember a friend of mine, her house was so messy it was out of control and I went around to help her clean up. She said to me that I struggled to clean my own home yet here I was helping her. I told her that when I cleaned my house it was just cleaning, but when I helped her I felt great joy and pleasure seeing how happy she was. What I am trying to say is that family and friends help one another it is how we have built societies and communities.

    There are also many organisations that you could approach for help and information regarding benefits and work issues, such as The Citizens Advice Bureau, Adult Social Services at your local council and any benefit advice services such as Disability Direct (their number will be in the phone book).

    Please try and get some help, you have worked and paid your taxes, it is your turn to receive some help now, reach out and ask.

    All my hopes and dreams for you.

    Ken x

  • Thanks for your comments. Yes i an in scotland. Not sure if they have pip here yet. Ive worked full time for 14 years so feel im must be entitled to have some peace without worrying about work or money.

    i think i defo will discuss with my gp with regards to fibro as it does fit all of my collective symptoms. Although i think my doc thinks im just a complainer about everything. The trouble with my surgery is everytime i got i am adsigned to a different doc. Its not possible to request to see a specific doc. Its just the way they work i suppose.

    I dont have children and still live at home (at the age of 30 lol) but thats because i moved out when i was too young and ended up severley depressed and in debt. I had a job i loved for 10 years and left because of my painful feet/plantar fasciitis (or as i call them granny feet).

    living at home has its advantages but my mum has severe arthritis in her hands/fingers as well as many other conditions so i help care for her too by going to shops and making dinners etc.

    i guess in at the point now wgere i feel i physicaly cannot work anymore and cope with all my many symptoms and help care for my mum.

    my employer have tollerated my absences since i gave sick notes from gp. But briught me in for absence review meetings whilst i was off sick and still refuse to drop my hours.

    Ive made up my mind. Tomorow im gonna tell my work that unless i work only 3 days a week i will go to doc for another sick note. And im also gonna call my gp tomorow too so i can get an app to discuss this further.

    again thanks. Its a relief to know its not just me thats like this. Thanks.

  • Hi yvonnescotland,

    First, I want to say I feel for you. No one actually wants to just stop working (as much as we all like to complain about work) so when someone says they're thinking about dropping their job, it's something that immediately grabs my attention. Would you do me a favor and tell me what the very worst problem you're having is? And by that I mean which one or two things would you need to improve in order for you to get your life running the way you want to? Off hand, I'd also like to know your height and weight. Also, you say you have insomnia. Could you tell me more about that? What medications have you tried and what are you on currently? Have you seen a podiatrist about orthotics for your shoes? Believe it or not, this could make a world of difference.

    While I can't speak for what government institutions do what on your side of the pond, I might be able to help you out with some ideas in terms of your medical conditions. Your GP may not believe you, but I do. And I'd love to be able to help you live your life on your terms.

  • Well im 5ft 5in tall. Not weighed myself recently but think im around 12 stone. If i recall correctly my bmi is 25 or 26. Ive been taking fluoxatine for depression for about 12 years. Most of the time 40mg but currently 60mg (max dose). My gp says this is prob the reason for my insomnia as a side affect. I have tried nyton, sleepeze, zolpidem, relaxing music, ocean sounds, nature sounds,sented candles, bath/shower,walking at night and prob a load of other stuff too. But generally i dont feel tired until the early hours. If i was to let it happen natrually mu day would be completely reversed. I prob wouldnt go to sleep until 5/6 am and get up about 3pm. I currently have been seeing podiatrist/physio for ovet a year. Have the orthodics, night splints and a list of exersised that dont seem to make a difference. Infact can make my symptoms worse. Ive also had cortisone injections 3 times in soles of my heels. This didnt work either.

    hope this info is useful to you in some small way.

  • Hi me again- can I ask you do not do anything about work just yet. Get signed off again- maybe you can force work to retire you but if you walk out on your own steam you could end up entitled to no government support. Can I check on pip and situation for you when I in work tomoz ? Xxx

  • Hi Yvonne, sorry to hear you're struggling with your condition and with work. You're story is very similar to mine! I had plantar fasciitis in both feet and eventually after the injections and Physio, lazer treatment didn't work, they operated on both feet. I got pains in my legs and thought it was because I'd be walking oddly after surgery but then started with excruciating pain in my hands and arms and knew that wasn't due to walking funny! Eventually diagnosed with Fibro. Had to leave my job 3 years ago as worked in maternity doing 12 1/2 hour shifts which I just couldn't manage and had lots of time off! Even when I then tried to only work half days I couldn't cope plus having a disabled daughter at home I didn't get any rest at home either. I also like you have a mental health problem and been on medication for years! It sounds like if you can't cope with part time hours you might need to stop work but it's not easy to do that. I hope you are getting some help with pain meds etc? And have you seen a rheumatologist? Sorry if you've already told us that. My memory doesn't work.

    I wish you good luck Yvonne in getting sorted out and hope you get the help you need. In the meantime we are all here to talk to for support. Good luck and take care!

    April

  • Not seen a rhumatologist but doc did do blood test for arthritis and said it was negative. Every time i go to gp with another complaint i feel like they just fob me off with painkillers and say that my soar back/hips is due to compensation walking with my plantar fasciitis.

  • I know what you mean about feeling fobbed off and they blame everything on Fibro! I had to go to docs today as have a hernia following my op 5 weeks ago and yet again the doc said why do you use a walking stick? Derr! They only have to read my notes and stop questioning me! If our gps don't understand us who will? Good luck Yvonne, you have a lot on your plate right now! Xx

  • I know. I sometimes use crutchies. I used them once when i saw my doc and he asked me why i had crutchies. I thought to myself just read my file you idiot. So i know exactly how frustrated you must feel. Good luck to you too

  • Thank you Yvonne, I think we both deserve a break! As do so many of our friends in this group. Take care

    April x

  • There are NO blood testings for FMS. Just to rule out OTHER THINGS. Your Rheumy did (F)ANA testings. This also picks out Lupus. But rules out FMS. Also, MS testings can be done. Again, to rule out both FMS/MS. Been there, done this.

    Joyce, USA

  • Its nice to not feel so alone. Im not the only one in the world and its not all in my head either xx

  • Dnt just leave go to ur go and ask for a rumotologist referral to get a definate dianosis b4 u do anyghing thats what i would fo anyway u must do whstever you think best for you also a pain clinic referral i hope thos helps if u just leave your job it will b difficult to get benefits one step at a time us what i did anyway good luck oh also a visit to c.a.b for advice x

  • Thanks for the reply xx

  • Your condition sounds like my son, who had similar pains through school and got to the stage in his teens where he was attending less that 50%. It was a long struggle, taking many years, but eventually I discovered that it was a condition called Thyroid Hormone Resistance. Doctors were little help and it was only through books and the internet that I got the information I needed.

    There is a Thyroid UK group on HealthUnlocked which is very good if you think this is worth further investigation.

  • I second this. Hypometabolic states is thought by quite a few circles to be at the root of fibro-like symptoms and probably even fibro itself. Dr. John Lowe did a lot of research strengthening this position and actually wrote a book on it called "The Metabolic Treatment of Fibromyalgia." Its a tough read without a science background though. I believe he also has a web page outlining many of these points. But yes, thyroid hormone resistance is a thing. A somewhat unscientific but oddly reliable way to tell if your in a hypometabolic state is simple to take your temperature throughout the day. If your average temp is 97 or less (I believe is around where Dr. Lowe treated but don't quote me) then you suffer from hypometabolism. If your thyroid hormone levels are normal, then the only possible cause could be thyroid hormone resistance.

    -John

  • Hi John, I have a copy of Dr John Lowe's book. Sadly he died last year and there is a dispute over the ownership of his books and website so a lot of his info is not currently available.

    There is some info by John Lowe, basal temperature etc on the Thyroid UK website.

  • Thanks for the info. I dont qualify for carers allowance as you need to care for someone like more than 30 hours a week like a job day and night. And caring for my mum is not that extreme yet.

  • I will look into this. Thanks for the info.

  • I will look into this condition further. Thanks for the info

  • Yvonne, I also live in Scotland and, although I am not claiming any benefits myself, I can give you some advice. First of please don't just quit your job. If you do you will be classed as having made yourself wilfully unemployed and you will not get any benefits for a minimum of 13 weeks, possibly more. There is no appeal for this. You are unlikely to be entitled to PIP based on what you have listed here and the fact that you are holding down a full time job with your current symptoms, I personally know people who are housebound due to illness and have you children to care for on their own, who have been turned down for PIP. I am not making light of your symptoms in any way, just passing on the information that I know to be true. A friend of mine who is in that situation is still waiting for her PIP to be looked at and it was sent away in early October 2013. She has a whole raft of illnesses which cause her very significant pain and is due to have at least 8 different surgical operations this year but is unable to access benefits.

    I also have fibro, after many many years of pain, and am currently off work ill. My employers occupational health service have advised that I may never work again and I have been put forward for medical retirement but I am unable to access benefits. The sister of another friend has recently had her long term DLA stopped and been told she is fit to work full time yet she has had a fibro diagnosis for the past 20 and in the past 5 has had at least 3 mini strokes, all affecting her physically and cognitively.

    None of these accounts have been exaggerated but are simply related to let you know how bad the current benefits system is here in Scotland. I have no answers as to how you progress in terms of work/benefits but I would caution you to avoid the phrase 'I have worked for 14 years so surely I am entitled...' for 2 reasons. 1) I would avoid the use of the word entitled in relation to benefits as it is the overuse of this words by many who feel they should be entitled to something from the governemnt that has caused such a crackdown on benefits for those who genuinely need them. 2) that phrase gives the impression that you are seeking benefits to avoid work, not because you are genuinely ill. I would urge you to stress the difficiculties that you face before any mention of benefits but I would seek the advice of your GP and your local citizens advice office before you terminate your employment. Good luck.

    Linda

  • I forgot to add please ignore any typos or spelling mistakes in my reply as my right hand is currently numb, again! It is very frustrating.

  • I get what your saying. But please dont misunderstand. I pointed out i have worked all my life so peopkl know i havnt spent my life on and off of benefits. It fells like just asking about applying for benefits is a no go subject. Like im wrong for even suggesting the state pay for me to live a life of luxury. Believe me thats far from the truth. I simply want to point out i can hold down a job. My prev job was ten years and my current job is a year and a half. Im good at my job and do enjoy it.

    I called my employer today. They still refuse to give me part time. But say they are looking into for poss the next 5-6 weeks. But until then work full time. Ive asked if i can use holidays 2 days a week as i feel any more than 3 days a week at work just rips me back into the vicious circle of overdoing it and causing pain.

    I hope you dont think im trying to seek an excuse to stay off work. Believe me id rather work and make money. But im miserable, in pain and struggling to cope making my condition worse.

    All the best xxx

  • First of all how did you get all these emotion all packed on one place at the same time. Now for you to be officially diagnose with fibo it consist of lots'of test.the GP will have to go through all the checks and it takes a very long time.You cant stop your job like that you will have problems with DWP, and may be you can be penalize, you need to be of sick for a while and you can take it from there.you did said you don't know whether you are entitle the benefit mention, if you don't can I ask what nationality you are and if so you normal leave,work in the UK so why do you think that you are not entitle. Ava Lumely

  • Im scottish uk nationality. Entitlement --- i was meaning if i leave my job due to my illness and because they cannot give me part time. If i try to claim benefits would i be banned for like 13 weeks from claiming or would the fact my employer cannot accomodate with the hours im asking for be ok and i could claim benefits such as esa and dla/pip

  • Yvonne, please don't take what I said the wrong way, I was not implying that you were looking for a life of luxury on benefits or that you had been off and on benefits previously. You say you have held down full time employment for 11 and a half years - the benefits people will claim that as you have been holding down a full time job for that long you are surely fit to work. Several people here have given you the same advice about not simply leaving your job. Regardless of whether your employer can give you hours that you can manage or not, if you leave your job you will be penalised by DWP.

    I have worked for more than 40 years and brought 3 children up mostly on my own. My oldest son has ADHD and dyslexia and my youngest has aspergers. I have not claimed benefits but worked full time for most of that time and part time when my children were very young. I have lived with pain for many, many years but, like you and many others, I have to work within the system. I may qualify for some benefits down the line but whether I get them or not is something else again. Like you I would far rather be doing my job, one I absolutely love, but my health prevents it. Please listen to the advice you have been given and try your local citizens advice bureau for advice as well. Good luck.

  • Hi yvonnescotland,

    I'm a day late to this conversation, I'm sorry. I really hope you are ok. I have been exactly where you are in the past 6 months, we are a similar age, and it's still raw and very real so I can totally relate. If you would like to let me know where you are up to right now today, and haven't been overwhelmed with advice, I'm am here to help. Please believe me when I say I understand, more than anything I understand the anxiety and the feeling of needing a solution right this minute. It can totally overwhelm you and make you make quick decisions. First things first, sick note for at least a month, and breathe. If you would like to go through it please give me a shout. Xxxx

  • My last sick note was for 3 months. I went back to work after 2 months. I got bored and skint. Went back to work on 6th jan and had 3 days sick since. Hopefully things get better soon

  • I have had fibro since a kid and I have most of the problems you speak about .I had to give up,work 8years ago and my help has deteriorated I think I hung on longer than I should have and when my body hot a rest it went mad.I have never claimed any money because I could not cope with all the things they put an already sick person through so good look with that .Im struggling bad at the moment no sleep pain won't stop and I don't know what to do except try and not get stresses about it .I have had this disease for over fifty years and I'm just about over it now .Take care of yourself xx

  • I hope you get better soon xxx

  • Hi, plantar fasciitis is also known as joggers foot, is associated with military soldiers foot complaints, marching band students, etc. So, no one group has the name attached to them. That being said, yes, it is an FMS thing as well. I too, was showing symptoms of an immune issue from preschool age and on. Doctors told my mom it was as if I were allergic to myself. Fast forward 55 years, and we all know what it was. I wish I had more information growing up...but in light of that fact, I think I have done very well in having doctors, pharmacists, alternative medical care and best of all FRIENDS/FAMILY who finally got it.

    I can't add to the legal standpoint of questioning things done in your country.

    The sensory of being a hypercondriac does not go away. We always have to convince others that FMS is indeed, real. There are still doctors who don't function in that realm of reality. Then you move on to a new doctor.

    Concerning your diabetes, you need to get that controlled. That indeed plays on the FMS as well. One thing that also is part of the game plan of FMS is a screwed up thyroid. Do some research on that. ABOUT.com is a good resource. My rheumatologist said (and world wide known fact) the thyroid has issues that complicated FMS. With fine-tuning my thyroid to the exact number, I keep better track of my FMS. I got through menopause with no issues keeping my number exact. I had 3 different doses of thyroid meds, going on symptoms one day meant dose change for the next. It takes note taking, control, and a willing doctor. My pharmacist would be called to verify dose change. I can now do this on a daily basis. Pay attention to your symptoms. BUT also know, you can create a thyroid storm action, so you must be under medical supervision to learn. Took me a couple years to be confident.

    You don't get depression because of FMS. That is a side affect of different things which then can RESULT in depression. I call it getting damn mad when I am ignored with my medical issues. Which then being DONE about angry, is not a continued depressive state. This is something needing to be sorted out.

    Medication for depression compounds and confuses how you are treated for FMS. Too many tails wagging the dog....and tossing the antidepressant bone to the dog is the first thing most doctors do....cause it is the easiest. Rather than help you figure things out.

    So when my doctor asks if I have depression issues, I say no, just feeling emotions that I should, sad when you are sad about something, happy, when due. Not a full menu of things never changing. Manic? No, that is something else. It is ok to go through the steps of grief when you discover your life has changed. There are many Fibro books written by good doctors who talk about the grief of FMS. But the also show how to work through it. One good book is THE FIBROMYALGIA SURVIVOR by Mark J Pellegrino, MD. I have heard him speak. He has FMS as well. He is a Physical Medicine and Rehabilitation doctor, practicing in Canton OH, USA. His book ISBN number is 0-9646891-2-X. He has several books. Another book you need read is FIBROMYALGA & CHRONIC MYOFASCIAL PAIN SYNDROME, a Survival Manual by Devin Starylanyl, MD. Another doctor with FMS. Understand that your dentist and your eye doctor also should be informed of the FMS, as there are factors they can treat or be aware of in the FMS pain. And a chiropractor or massage therapist is also trained in helping someone with FMS.

    You can find these books at Amazon.com or your public library or on EBAY. These are life-saving reading materials.

    Good Luck, Joyce, USA

  • Thanks joyce. Thats a lot of good info xxx

  • I forgot to add, for the plantar (foot) pain, I have added to my daily pattern of excise I can do...swimming. My foot stance is different. My toes point out more, I wiggle my feet around, I hate to wear shoes, which for me, cause an attack of foot pain. But my freedom of pain in the water is wonderful. My foot muscles are stronger, maybe the strongest in my body. and my foot pain has deminished to almost none. Took a while. Being a diabetic as well, wearing shoes is important. I have a couple different pair to wear out of the house. Do not wear heels anymore. I wear Crocs most of the time, as my feet love them. Easier to kick off.

    I should add that for many years I was the education coordinator for Fibromyalgia and chronic pain conditions for a big section of my state of Minnesota/USA for the Arthritis Foundation. I worked with doctors, specialists, got information out to them as well as helped patients find referrals, etc. Information and education is of the utmost importance in claiming your life back.

    Joyce, USA

  • Yes education is the key.

    I still feel tho if i go to my doc and ask if my symptoms match this condition that he may think im clutching at straws and looking for excuses for being sick off work all the time. And thats not the case. It would be easier if there was a simple blood test or something. The fact that there is no tests to varify these types of conditions makes it harder to feel believed by a doc. I know if you look online long enough you could match your symptoms to many conditions/diseases and think your afflicted with all sorts but the people here seem to be describing the same issues.

  • Thanks sweetie you to x

  • I forgot to address the cholesterol issue. It is a known fact (check MAYO.COM) that cholesterol medications of STATINS and people with FMS/arthritis factors do not do well. They make the health condition worse by taking the statins. Started doing research when after 6 years of statins, my diabetes AlC levls were high, chronic fatigue was a constant, the muscles of my body were getting weaker. TADA.....the research is there, hidden deep in some layers of information. It is coming to light more and more. This COVER UP by drug companies is worse than shameful. It is our death-sentence, if you will. Making what is bad even worse.

    It took me 7 weeks to detox the 6 years of use. It was the worst pain...FMS in the monster's worst. I had read a story in the Reader's Digest, went to my doctor and said OK is THIS what is making me worse? I had all the classic chest pains, tightening of the chest, neck, sure each severe pain was a heart attack. So I said I was stopping and she agreed. Then I saw the cardiologist the next week. He confirmed it was the correct treatment...NO treatment but removal of the statins in my med list. And the following week I did a full stress testing with nuclear medication IV. They could see what the statins had done. The 'damage' would be reversible. But the detox would take time and as I found out, very painful.

    The purpose of cholesterol medication is to alter the behavior of the liver and how it response in the making and disposal of the body cholesterol. This would include the good and the bad kinds. I was so sick and in pain. Well, consider what a drug addict might go through, yes, even scripted GOOD FOR YOU medications.

    This point being made, I need to add when you have FMS/CFS/Lupus, etc anything you add to the body DOES affect it. So saying you might add hormones. This alters the natural progression of WHERE the body is in the life span of cells. Changing things by adding hormones also alters the life cycle of everything else. The amount of different kinds of cancers women have been developing have been pointing to things we do that are CHOICES. There are male studies as well, but women in the past were quick to handle menopause and what DOCTORS called depression by adding hormones. My brother was one who developed 4 kinds of cancer when given the balance of male hormones to get him through puberty. He was special needs in his 40s and still dealing with puberty levels of hormones. His clump of cancers came all at the time same. From Dx to death was 7 weeks.

    So please be careful when adding things. Find out what each pills half life is...meaning how many hours it is full strength before it wains. Have a friend or as in my case, my pharmacist, who was my call to person when altering doses.

    I also had migraines in the middle of this, which we have treated well with diet (my triggers were craving of foods high in B2 vitamins. Orange juice and peanut butter. Got on a high does of B2 vitamin--600 mg now down to 300mg.) Headache Institute showed this was indeed a proper form of therapy...takes about 4 months to establish. I went from every 3 weeks to maybe 2-3 times a year of severe migraine.

    Joyce/MN/USA

  • Forgot to add, my A1C dropped to pre-diabetic status detoxing the statins.

  • Hi Yvonne, I'm sorry that you are struggling at work. I am in a similar situation. I am 35 years old and I am struggling with my full time job too:-( I used to be a Community Support Officer with the Police but I have been in Clerical Role for 14 months after they tried (and failed!) to get rid of me. My concentration is shocking and I can only manage one thing at a time. I also have cognitive and memory problems. My employer is being sympathetic at the moment as I am registered disabled - I had to get my Union involved on more than one occasion! I could drop my hours but I have my own place with a mortgage so I can't afford it. I have had time off sick and I feel better for it but when I go back I feel worse again.

    I would speak with Citizens Advice. You could maybe see about a "work capability assessment." You do have certain rights at work and your boss should make reasonable adjustments (including part-time/job share).

    I might be wrong but I don't think you would be entitled to benefits if you leave your job without being assessed for work capability.

    From one 'youngster' to another, I hope everything works out:-) Hugs x

  • Thanks for the support. Spoke to my employer today. Hopefully going to be using some holidays to make me part time to help me at work until they can make me part time in the next month or so xx

  • I am so sorry to hear your story and worse still I have no answers however you describe me to a tea. Please if you ever want to talk and if we are allowed to swap our own emails I wud love to converse with you. Only probl I have on this site is that my smart phone keeps having problems. But I really hope you get some helpful replies and I will be looking out for them For now all my love xxxx

  • Hi, I too had 'growing pains' as a kid and on and off as I grew up. In my 30s I got Epstein Barr Virus (Glandular Fever) and have never really been right since. However despite pain etc carried on working, till I was in a car crash which caused severe nerve impingement in my neck,back and base of spine, following that I had 5 close deaths (most of my immediate family) within 18 months, got divorced married moved house and nursed my dad till he died with cancer. Gradually got worse, not sleeping, pain, no memory and a whole host of stuff, back and forwards to gp, signed off with stress. Having done a whole host of tests I was referred to the Rheumotologist at local hospital. Before I went cos brain was so bad I sat down and wrote down all that was wrong with me, there was no way I could remember a full A4 page of symptoms. Finally saw Consultant and gave her the list, she turned round and said before examining me that I almost certainly had Fibromyalgia. She changed all my meds. I had also been severely depressed and suicidal, she changed anti-depressants, put me straight on Tramadol and various other things. I went home singing, I wasnt going mad. I was lucky enough that work allowed me to work from home on days I was too ill to commute to London and they could see I was working at 3am by my emails etc. Eventually they sent me to Occupational Health, who then agreed I was unfit to work and had to take early retirement due to illness. It took me 10 years to come to terms with being kicked out of a very well paying job and existing on a very small pension and limited benefits.

    So from the lessons learned: As everyone says, you must stay working for as long as possible, go to this website and print off two copies of fibro symptoms, take one to GP and ask to be referred to Rhuemotologist. There is a lovely lady on this website called Mdaisy who I am sure could lead you through where to get the appropriate documents . Ask your physio for graded exercise stretching, especially for Fibro peeps and ask for hydrotherapy, it works. Take the other to your employers and tell them you are asking for referral to Rhuemotologist for Fibromyalgia but the list is the symptoms of what you are basically suffering from, it does help for them to have something tangible. You really shouldnt have to take holidays to reduce your hours, ask if they have Occupational Health that you can discuss your problems with. Check your phone book and the web to see if you have a Disability Resource Centre near you. They are free and can give you loads of advice, will fill out forms (including all the DWP stuff) and may well help you with your employer and the legal stuff. They are used to dealing with Fibromyalgia. They will also give you advice on helping and caring for your mum. They also do loads of gadgets you can try out to help with everyday living. If you are having trouble doing everyday things like lifting saucepans, picking up things, getting up an down to the loo, ask your GP for Occupational Therapy, they should come and assess you and mum and within their limited budget give you stuff to help you cope with everyday tasks or point you to where to buy things. Even getting in and out of the house, they gave me half steps, they are brilliant, I have a second bannister rail to balance me going up and down stairs, grab rails and all sorts. But I have found that if you dont ask you dont get! So ask, they can only say no.

    Good luck in everything, smile at least once a day ( it exercises the muscles and makes everyone wonder what you are up to) and remember there are people out there to help you, you just gotta shout! xx

  • Thanks thats a lot of great advice. I will defo ask my employer about occupational health. I recently made a list of all of my medical issues and counted 21. Just that amount alone was a shock. I will take my list to my gp for further advice. When im next at my physio i will also take the list and discuss other options

    thanks again

  • hope you get results, we are all here for you whenever you need us Lynn xx

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