I'm new, advice and life experiences needed, please!

Hi to you all,

I was diagnosed with fibro last year, I have been in alot of pain for nearly 2 years. It started when I had ops for my endendometriosis. I seem to suffer alot of things and wondered if they were all part of fibro or my body just hates me? I have chronic ibs, migraines, irritable bladder and my legs and back are always painful.

I have apply for PIP but looks like I may have to go back to work but I am shattered and in pain after going to the shops let alone work, do any of you work in a firbro friendly place?

I would appreciate any advice....I am so totally fed up and feel broken!

Thanks,

Helony xxxx.

28 Replies

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  • Hello Helony, Welcome to the site. The symptoms that you have described could very well be fibro,

    You dont say if you are getting any treatment or not. or if you have been refered for various treatments. We cannot say for sure that your symptoms are fibro or not as we are not doctors but fellow fibromites who help and support any one who need it.

    Have you been on the mother site yet? there you will find information about fibro from symptoms to treatments and benifits. To get onto the site click on the yelllow butterfly at the top of the page.

    Sorry if I am rambling, Its getting near bed time. I will let you have a look around and then please come back onto posts for any reason whatsoever

    Hugs sue xx

  • Hi Mayrose,

    Thanks for your response. I have been looking around the mother site. I am on healthunlocked for my endometriosis too. So have some idea of how it all works, lol.

    I am receiving treatment of my fibro, I now take 3 gebapentin a day and have a tens machine. It have eased but I currently suffering quite badly with my stomach and IBS to the point I was at A&E on friday.

    This fibro is taking over my life, I am so shattered and just hurting, I am only 26!

    I see alot of ppl are having trouble with PIP, I have beem waiting for an assesment date since December.

    Do you work with fibro? If so what job is it? Cause I can't find anything suitable.

    Hugs back, we all need hugs!

  • Hi I'm new to this I am the same I've been of work now for nearly a year due to endometriosis on my cervics I now have ovaryian cyst but they think it might be endometriosis on my ovarys I'm am on ESA but have put a claim in for pip the doctors now say I have Fibromyalgia but haven't done any test just from my constant appearance in the doctors and having bloods and scans done all the time . Do you know if pip will just contact them and find out or will I have to get it In writing from my gp thanks

  • Hi Dod,

    I am really pleased you have responsed. Thank you. I am sorry to hear about your troubles. I have recently had blood test and they all come back normally everytime!

    I had endometriosis removed from my womb, bladder and bowel but feel it may be back. :(

    I applied for pip in December after I lost my job due to endometriosis pain, I have been consantly calling to see when I can get assessed, they are meant to see you 20 weeks after applying but there is a back log at the moment and they just said I am on the list. So you will have to wait for an assessment then they will prob contact your doctors etc....has your doctor refered you to the pain clinic? I got a tens machine from them, it doesn't help me but some ppl it really helps.

    We have similar situations.

    Sending Wishes,

    Helony, xxxx.

  • Thank you for your reply I am under the pain clinic for my back as both my disc are worn and have 4 damaged vertebra but I'm not back at the pain clinic till September seems like a life time away. I was a childminder before my endemtriosis had key hole done and just gone down hill since then having four children and my youngest is 3 Is so hard now days with this sever pain and tried all the time I had my letter to say I have to go for an assement for my pip just wondering what to expect if anyone knows

  • I used to work in childcare also! Ouch you have been in the wars, maybe talk to your doctor about refering you agian or phone the hospital and say your condition is worsten and need to see someone sooner, get the doctor to write a note and take that with you.

    I would love to have children, me and hubby plan too but with all this pain it never seems the right time. It must be very diffcult with children.

    I think the best thing to do about pip is look up on gov.co.uk or go to the fibroaction website and there is sections on benefits I believe. Or just post a question on here, I am sure you will get some responses. How long did you wair for a response for an assessment cause its been 6 months for me and no appointment yet, I am going to have to go back to work to help us money wise, as hubby has a injury too and is off work. Just can't find any work where I can be comfortable pain wise.

  • Hi I received my letter about 3 weeks ago to say it would be another 12 weeks before my assement came through I've been waiting 28 weeks it's a joke I've worked all my life and always worked with children I now have no job to go back to as I've been of since September. I have applied for quite a few jobs and had interviews and been offered the job only to be told I'm unfit for work as I can not pass a medical and the systems makes it impossible for us to claim anything I do have a partner but he isn't on a great wage and with four children full rent and everything else can hardly afford to live his been working weekends aswell but the more he earns the more the tax man takes of him it's just a fight all the time.

  • This is the situation we are fearing, my hubby just had a op from injury and now is ready to go back to work but on reduced hours and we don't know how to be able to live on even with the benefits we will receive. So it look like work for me, But all my qualifications are in childcare so alot of admin based jobs don't give me a second look but thats all I feel I could manage.

    It is very frustrating but there is not alot we can do :(

    My doctors class me as unfit to work, so don't know where his will go.

    I hope things go well for you at the assessment, do let me know!

    Its nice to talk to someone who understand endometriosis as well as fibro.

    Fingers crossed! XxX.

  • Hi again I never knew there was so many people out there with fibro having a bad day today another day of medication medication that doesn't seem to help me at all any tips on dealing with this pain can hardly move which is impossible when I have a 3 year old daughter to look after all day hoping things would get better after have medication but can only take a 100 mg if gabtin through the day as the 300 mg I have knocked a me out thank you south for your replys it really is good to know there us people out there that understand what I'm going through

  • Hi Dod,

    Sorry to hear today is diffcult for you. It must be so hard for you with a little one about. I think the important thing the little one understand you feel poorly too. And have a DVD day or something like that. Just a suggestion.

    Some people say heat pads help with pain, I take tramdol when my pain is terrible. But its just a case of juggling meds and there side effects. I think your best bet is to call the hospital to gt your appointment bought forward, there isnormally a number on the nhs letter saying I condition worsten to contact them.

    Always feel to message me if you need a chat!

    Helony/Helen xXx.

  • Thank you it's nice to know people care I'm gonna take your advice and ring the hospital in the morning I've also tried tramadol but it's hard to find something I can take threw the day which does make me sleepy as my daughter only goes nursery in the mornings couldn't possible afford her to go all day but thanks again hope you've had a better day and I wish you husband a speedy recovery

  • adviceguide.org.uk/wales/be...

    Some advice which may help?

  • Hello Dod. When they do the assessment they will ask a lot of questions on what you can or cannot do. Always remember to tell them about your worst days and not what is average. They may ask you to do things like lifting your arms. Bending testing your balance. If you cant do it tell them so dont force yourself to do something that hurts.

    They will ask you to tell them about your day and weather you can cook a meal. do you need help with cooking dressing ect be honest but again tell them about your bad days. hope this helps sue xx

  • Thank you they just make you feel like your trying to claim something you not surpose to don't realise the pressure on use us making us worse

  • Hi Helony

    I"d like to welcome you to this wonderful Site. Sorry to hear you have been diagnosed with Fibro & can relate/empathise totally with analogy of feelings as if your body is "broken!"! Unfortunately Fibro can be an insidious illness, especially when "Flare-up"s" occur & you don"t know where to turn to get out of the horrendous pain!

    Are you under the care of a Reumatologist or Pain Management Consultant yet? Just enquiring as these are the people who can help with correct medications & have immense understanding on how Fibro basically destroys our lives! Sorry to sound so glum but feel as if Fibro has "Stolen!" my life as I once knew it!

    From being furiously independent to I can"t even drive myself anywhere any more & have to rely upon my husband who is my main Carer!

    You say you have applied for PIP, I sincerely hope you are successful with application! If not please don"t give up, I know lots of people who have been successful on Appeal, it is only what you are entitled to (In my humble opinion!).

    I hope you find this Wonderful Forum as helpful & supportive as I do.

    Looking forward into bumping into you on the Site.

    Take Care.

    Sending you positive healing energies.

    (((Gentle hugs)))

    Lynn X

  • Hi Lynn,

    I am so thrilled with the respone I am getting just from one simply question. Thank you for your response.

    I am under the pain management team they have started me on gebapintin 3 x a day and a tens machine, and counselling.

    I feel I have just started my married life and it has been rip from me, thisdaily pain is testing my patient.

    I am sorry to hear of your 'battle' with fibro and I wish you well! We seem to be lucky to have hubsand who have patience and kind heart.

    There is such a back log on PIP because they are reassessing all Disability allownace people as well. But it just unbelievably slow.

    Do you suffer from simular symptoms as me with the fibro? I have also just been told I have tietez syndrome.

    Just so fed up!!!!

    Gentle hugs are indeed the way!

    Thank you!

  • Bless you Heleno to be newly-wed & diagnosed with this insidious illness, I can totally empathise/sympathise & relate to you.

    I am so pleased to hear you are under the Care of Pain Management Team. Have the offered you a place on a Pain Management Course yet?

    It usually a Course self-explanatory, where you attend for so many weeks or a Residential one! If you are lucky enough to be offered a place & feel up to the challenge I would highly recommend you @ least give it a go. Team made up of Psychologist, Psysio-therapists, Doctors, Nurses, they don"t really discuss medication, just a way of coping/living with progressive chronic pain!

    I have ME?CFS?Fibro, Elhers-Danlos-Syndrome. Kidney/bladder problems. slipped Discs in back, problems with lungs, having recurrent bouts of Pneumonia, the list is endless to be honest. I also suffer with IBS & had a Nervous Break-down approx 8 years ago!

    I have had ME/CFS over 25 year plus diagnosed with Fibro approx 10 years ago. I am very blessed with my husband who was advised approx 7 years ago to finish work to Care for me. He had excellent job with Salary to match! He did"nt hesitate & has been my Carer since!

    It is only a suggestion but if you are still in intolerable pain, please go back & let the Pain Management Team know! It took a while to get a "Cocktail" of medication for me to receive the best benefit out of all the meds I tried!

    You mentioned Gabapentin, do you find it helpful? I was on this but did"nt help me much, they changed it to Pregablin (which is more expensive, that is why they try the Gabapentin 1st!) & I found a vast difference! I am also on Morphine Slow Release (MST) with Oral Morphine for break-through pain, Amytriptylline, Diazepam (for muscle relaxant). It can take quite a while of Trial & Error to get the concoction of medication right to suit you! That is what the Team are there for to help you control the pain best way possible, so please don"t be afraid to tell them if something isn"t suitable for you. which I have to say you don"t sound as if you are having much relief from current medication!

    I am no Doctor just letting you know there are many options of Pain Relief out there for us Fibro Sufferers!

    You sound as if you are very fortunate with your husband! One who understands & would do anything to help you, its difficult for them to watch us in such agony too! My heart goes out to the both of you.

    I sincerely hope/pray you can get you pain under control asap! Also hope/pray you hear from PIP & are successful too!

    In my thoughts & prayers/

    Sending you positive healing energies.

    (((Gentle hugs)))

    Lynn X

  • Thank you Lynn for sharing that with me...I sometimes feel when I am asked what medical conditions I have are endless! And doctors have laughed in the past. I have grown up with illness after illness and my hospital folder is thick as a tree trunk, lol,

    I am on the list for the pain management course but couldn't face going alone, so having to wait for available space so my hubsand can come too. I think he needs the course as much as me, to help skills to manage our 'new' lifetyle. Although I do feel this will not help me, from what I see on here this course has helped many.

    I have been on gebapentin for 3 months now, I think doctors want to up dose to maximum before reviewing. Amtriptylline was a nightmare for me. I am alot of medicine for my other conditions too, so I rattle as I walk, hehe. I will keep the other meds you meantion in mind for the future!

    I can tell you have been on a long road, and I really appericate your advice and prays. And wish you pain free days! I really hoping PIP will response soon because its adding alot of stress and its not helping my pain at all.

    Thank you Lynn, Gentle hugs to you!

    Helen x. (Helony)

  • Hi Helony

    Welcome to the forum, and I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you are struggling in this way and I genuinely hope that you can find some resolution and relief to these issues.

    I was wondering if you had heard anything about your PIP? Whether or not you have been given an award? I was also wondering if you have considered trying to claim ESA if you cannot physically return to work? I have pasted you the GOV.UK how to claim ESA link below:

    gov.uk/employment-support-a...

    I can imagine that you feel quite bewildered at the moment and not sure of which way to turn? However, if you have a good GP then it may help to ask for referrals to Rheumatology and / or A Pain Management Clinic, to see what they can do for you? As you have probably discovered by now it can take time to get the medications right that work for you?

    I want to wish you all the best of luck and I genuinely look forward to bumping into you around the forum.

    Ken x

  • Hi Ken,

    wow a volunteer answering questions. This forum seems very impressive and the response to my question have helped me feel a little better.

    I am feel particularly fragile today and can not sleep due to my discomfort, hence the late hour of my reply.

    Thank you for the information on ESA, I have looked into it but my hubsand is currently receiving it, so trying to work out if I can also apply.

    I applied for PIP in December and am on the waiting list for an assessment currently, I haven't been given any awards, what are they?

    I have a fantastic doctor who diagnosed me a year before it was 'officially' confirmed. And under pain management treatment and meds etc.

    Thank you for your warm welcome and response. Are you a fibro sufferer yourself?

    Helony.

  • Hi Helony

    I always try to answer every question on the boards even if it is to just say hello! I was diagnosed with Fibro late last year, but I also have COPD, Asthma and Arthritis. They are a good combination for feeling unwell most of the time.

    You should be able to claim ESA despite that your husband is, as it a taxable benefit that is paid to an individual and couples. On the link I sent you there is a section on joint claims for ESA, it is a question of finding the right section?

    Since you have not yet had your assessment, I have pasted you an ATOS PIP link, it tells you what to expect when they want to assess you. It always helps to be informed!

    atoshealthcare.com/pip/

    I am happy that you are finding the forum useful, and I hope that you can find the answers that you are looking for.

    Ken x

  • Thank you Ken, Hope to bump into your during questions and posts!

    I shall look into the information you provide when I feel able. Still can not sleep because of pain.

    Helony/Helen :)

  • Hi Helony :)

    Welcome to our fibro friendly forum and I hope you find us caring, sharing and supportive :)

    It's a lot to deal with at once isn't it when you have so many illnesses battling to make you feel ill at the same time.

    I also have IBS problems which led to me having corrective rectal surgery last year and also have menstrual problems which mean heavy and painful bleeding, since it began really!! I have recently had the Mirena Coil fitted to see if it will help control the problem and understand how painful and sad it is to suffer with such ailments. I am facing surgery if the coil doesn't work :o I'm 40 :) never had children.

    That aside the fibro pains are esascerbated at the same time :(

    Many of us can associate with what you have told us so you are not alone and there is always someone listening here to give advice, support or even just a reassuring hug :)

    We are usually advised to learn how to pace our activities and adapt our lifestyles to suit what we are capable of doing. I did that through a pain management programme which I found to be of fantasic benefit which you can ask your doctor for a referral explaining that it may help you with your job and day to day to living. Explain how your pain is interfering with your job and life as a whole.

    fibroaction.org/Pages/Lifes...

    The following links are from wwwgov.uk regarding being disabled and work, and the kinds of benefits etc, there may be some useful links for you on these pages :)

    gov.uk/browse/disabilities/...

    gov.uk/browse/disabilities/...

    I hope the links are helpful and wish you wellness Helony and must say that I'm not a medical professional just a fellow fibromite sharing some info with you and hope you manage to sort something out with your work. I know how stressful and exhausting it is to be worrying about it.

    Fluffies and smiles and apologies for the epic reply :o

    :) xxxsianxxx :)

  • Hi Sian,

    Thank you for sharing your story and your warm welcome to the site. It's amazing the volunteers are replying to me, I been on forum before and had no support. I really appericate it.

    I also suffer menstrual problems, which turn out to be endometriosis and am now on a pill which stops my periods, which is bliss. :)

    I will have a look at the link you have provided, thank you!

    I just having a tough time at the moment and just feel my body is broken. I felt all these problem was just me but it seem with fibro comes alot of problem on the side line.

    I hope to bump into you again, Sending prays and wishes,

    Helony/Helen xxxx.

  • {{{{{{{ Helen }}}}}}} fluffie hugs

  • So sorry sweetheart!!! I worked for along time, then I just couldn't do it anymore. I can tell you that it only get's worse. I'd go to a pain clinic. If your doctor is good and compassionate it goes along way towards getting your disability. I hope this help's as I know how much it hurts. I had a hysterectomy when I was 30 due to endo. If I can help answer anymore questions I'm here for you!!! xxx Mitzi

  • Hi Mitzi,

    I lost my job in December before I found out my fibro. I am praying PIP atos will give an assessment soon!My doctor already expressed his willing to help in anyway.

    Thank you for your response and support,

    Helony XxX.

  • Hope you get it sweetheart!!!! xxx Mitzi

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