Hi, I'm new here . Anyone with multiple health problems other than Fibro ?

Just wondered if anyone here has multiple health problems along side the fibro ?

I have Sjogrens Syndrome and anxiety disorder as well as clinical depression and agoraphobia . I also suffer severe IBS and gastric reflux !

Some days it feels as though as soon as I get one thing under control , something else is waiting to start !

One of the scary things for me has been the amount of chest pain I get . First time it happened I thought I was having a heart attack , but the pain is in the breast bone and surrounding muscle rather than being inside and all tests for heart problems have been clear.

Because of all the different health problems I seem to have been poked and prodded by lots of different specialists at a variety of different hospitals and I'm no nearer to finding solutions for the problems I have . It's no wonder I get depressed ! Problems with my stomach mean some medications for pain management are unsuitable for me , it's a fine balance treating one problem without exacerbating another !

The Agoraphobia makes getting to doctor or hospital appointments interesting to say the least . I often have to cancel and re-arrange them . I sometimes just feel a prisoner of my own body .

So that's me......... I'm not always this whiny , just having a bad day ! :)

14 Replies

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  • Hi Helen, you're in good company as loads of us have multiple conditions, mine are all listed in my profile. I suspect that you can't use anti-inflammatories due to your gastric problems. I can't take them either due to my kidney problems (that were caused by them). It is more than likely that the chest pain is caused by the reflux. I think most of us suffer with depression and as you say, with all the things we have wrong with us, it's not surprising. Have you been given a diagnosis of Fibromyalgia? If so, you need a good Rheumatologist as well as referrals to a pain Consultant and a Pain Management Course, to help you find a mix of meds that will work for you and other ways to manage all of your conditions, including the Agoraphobia that must be a nightmare on it's own. I'm sure you'll get loads more replies, hope I've helped a bit.

  • Just checked back and thank you for all your replies !

    In answer to Lynn , yes I've had the ECG repeated 4 times now , they tell me heart is fine and then send me on my way... I've had Agoraphobia since I was a child and have had numerous attempts at treating it , including psychotherapy , hypnotherapy , CBT and anti depressants . They have all had some success short term but eventually it creeps back . One of the things I'm supposed to do is make sure to leave the house every day , even if only for a short while . However when you feel really ill and can barely get out of bed you tend to forget you're supposed to go out ! Of course it only takes missing a few days and it's back to square one.

    krafty , yes you're right , I can't take anti inflammatories and some stronger pain meds . I can't take anything with codeine in and only low doses of ibuprofen based meds , I also have to avoid aspirin in any form . My GP is now considering morphine but is reluctant because at 48 she says I'm too young and would need a gradual increase of doseage. I was referred to a Rheumotologist who diagnosed the fibro but then care of symptoms and pain management was handed back to my GP ! She referred me to a pain management clinic but the agoraphobia made the 14 mile journey there impossible for me so I only attended twice- long term treatments are hard to follow when you never know if you'll be able to leave the house next time :( . I've thought myself that the reflux could be causing the chest pain , it seems to be mainly in the evenings a couple of hours after eating and when I first lie down in bed. It feels like my breast bone is bruised !

    Jules, that's interesting you mentioning the down below problems . I've just been through a whole round of tests " down there " , including an endoscopy , a barium enema ( not nice ! ) , tests for ovarian cancer and smears and scans for womb and cervical cancers. All were clear ( which is great of course but means I'm no further forward ! ). Costochondritis is something I'll raise at my next appointment as it hasn't been mentioned to me before.... The anxiety attacks are the worst aren't they ? Many a time I've dumped a trolley of shopping and exited Asda fast !

    To be honest I'm sick and tired of being sick and tired ! I'm about to get married and my fiance is an absolute angel to put up with what he does, he's fast becoming my carer and that is so NOT what I wanted at 48 . I'm moving to a new area ( Hampshire ) from my present home in the West Midlands , which means a whole new set of doctors and hospitals to wade through and the anxiety attacks are increasing because I'm now starting to panic ... about the wedding ( will I make it to the registry office ? ) , moving home , having to start again with new clinicians ( I've been with my old GP surgery since I was 15 ! ) . It should be a happy time in my life and I'm terrified !

    4 years ago I twice tried to take my own life , I have been ill for so many years and I just couldn't take it any more . Luckily for me I was found in time both times and the psych services stepped in . I was prescribed Diazepam by them but my own GP refused to keep me on it because she doesn't want me addicted ( personally being addicted to Diazepam sounded better than being constantly in pain and anxious to me ).

    I'm so fed up with waking each morning to be assaulted by some new pain or ache . I just want a break from it !

    Thanks so much for replying , suddenly I don't feel such a freak.

  • Hi Helen,it could have been me writing your piece as I have exactly the same problems. My agrophobia goes back to my childhood, started when I was about 15 and I have just lived with it. Went on to marry and have 2 children who are both grown up now. I also managed to work.Going out of as morning,staying in in the evening. How I managed it I dont know how. Used to sit on the stairs pluckingup courage and then just run out the door. Had all kinds of treatments over the years, but its still there lurking in the background. How many hospitaland dentists appointments I''ve cancelled I just cant count. Have CFS/FM,Divertilulitis, Arthritis,Got that many that I cant remember them all. Oh, and problems "down there"now, which they think is due to Pupendal Nerve Neuralgia which affects your bowel and vagina and bladder. Being referred,though God knows when to the Pain Management Clinic,which is about 7 miles away,but goodness knows how I'll get there. My husband will take me first time but I cant imagine him taking me every day and I'd never make it on my own. Also have the chest pains you describe.. The bones in my chest hurt to touch but thats put down to the Fibro. Have been on Diazepam since it first came out in the early 60's. Dont care what anyone says, I find it a great help even after all these years. Am on Dihydrocodeine, Paracetamol and numerous other tablets for reflux.'Have left trolley in supermarket numerous times and once when I was young as were my 2 daughters, saw a bus coming and dashed home and left them by bus stop as I took short. Hate going on buses and always have to know where the nearest toilet is. Although I dont go out at all now, last time was 24th Jan to go the doctors; that's the sum total of my life in a nutshell these days. Doctors have given up on me now and I get very little support from them. "Friends" have become non-existent but sometimes that's a blessing as when I'm in bad pain I'd rather be by myself and cope in my own way. Your story sounds identical to mine.

    Do hope your fiancee will be able to understand how your feel. This will be a true test of is love for you. My husband is OK but beginning to get a little impatient now as he is 76 and I'm 74 and my daughters are in their 50's. The guilt I feel for what they must have had to put up with years ago is insurmountable.

    My goodness I do apologise for going on so much. The thing is, when you dont see or speak to anyone all day and then you come on this wonderful site it all seems to just pour out, after all only us who are suffering understand how each other feels. So sorry if I've bored you.

    Take care and keep posting.

    Avril

  • Hi Avril,

    Gosh you're right, I think we've been leading identical lives. This site has been a God send for me . Over the years I have felt a freak because people who don't have the problems struggle to understand. I had difficulty maintaining friendships as a teen because girls that age are generally so sociable and the problems I had meant I couldn't make plans in advance. When you have to let people down all the time they soon drift off.

    My AG started pretty much as soon as I was able to go out alone, which back in the 70's was at around age 9 or 10 . Getting to school was a nightmare , especially when I reached secondary school age and was expected to walk alone . Being at school was even worse because it isn't somewhere you can escape from.

    I have 2 sons and getting THEM to school was also horrendous , like you I'd start to panic when it was time to take / fetch them and would then be in a state and have to dash out and run to the school . I was so relieved as they reached an age where they could take themselves. My youngest son is autistic, he's 22 and had an escort to school when he reached secondary school age as I can't do public transport and I don't drive so I couldn't take him . My ex husband refused to believe it , he has little empathy for anything other than physical health problems . So he had very little time for either me or our son . We once stayed as a couple, without the kids , in a hotel in the Lakes and evening meal time came around . I hate eating in public and I just couldn't go to the dining room , he was really impatient with me , shouting and storming around . In the end he went down alone to dinner and I stayed in the room and just didn't eat.

    Sometimes I can't even go out into the garden without stressing .My fiancé though has been fantastic , his mum had both AG and physical problems so he's grown up with it and is so understanding . If I can't go shopping ( which is often ) he will go instead, or wait for a panic attack to subside so I can go with him. If I have an anxiety attack in the shop he will tell me to go wait in the car and finish off the shopping. He's never once gotten angry or impatient and that makes such a huge difference I find.

    It's interesting you mention guilt , I think guilt is something I'm an expert on . I HATE having to put on other people and I'm not good at asking for help . My mum left when I was 4 and my dad was a clinical depressive so my childhood taught me to rely on myself as much as possible... I never told anyone if I was ill or feeling agoraphobic, I'd learn little tricks to try to deal with it. Or I'd just suffer .

    I have a busy week coming up and I'm dreading it ! By busy I mean a trip to the hair dressers ( haven't been for a year and my hair is now waist length ) and a visit to the dentist . It will be interesting to see if I make it. I've been out 4 times since Xmas....

    Toilets - I spend most of my life in them !

    Trust me, if I could persuade my GP to give me Diazepam I'd be on it like a flash . The week I was prescribed it by a psychiatrist was one of the calmest weeks I've had in a long time. Right now I'd take anything to get some relief . I've tried exclusion diets , prescription meds, alternative treatments and therapies . None have had a long term effect . Even sorting out my repeat prescription is like a military operation .

    It's wonderful to find a site like this where people truly understand.

  • Glad to know my blog was of help. Know 100% what your going through. At least you can get to the hairdressers.I haven't been for about 2 years now.Luckily one of my grand daughters came and cut mine last week. Not what I wanted but better than it was. Keep putting off dentist because i am in so much pain and when I do get round to going i always ask for first appointment after lunch so I dont have to wait. As I said I've been out once since Xmas but that is more to do with the pain I'm in not the AG.

    My husband does all the shopping now. Anyway it gives him something to do. But when you think, it's not fair. Work all your life and when you finally retire and can afford to travel and see the world you get strucki down with somethinglike this. One of my grand daughters get married on 30th March but there is no way I'll be able to attend. Have finally learnt to say NO when I know something is too much for me,but cant, say its gone down very well .Said yes too many times in the past,pushed myself to do things so as not to hurt feelings but now its my time and where is everyone?

    On a lighter note, hope this has helped knowing you're not the only one and you're not going mad. We are all products of our past environment..

    If ever you want to email me its avriljones88@hotmail.com.

    Hope youmove goes well. The change of environment might do you the world of good.

    Best wishes.

    Avril,Liverpool.

  • Thanks Avril ,

    Congratulate me once I've been to the hair dresser lol . This is my second attempt to get there , I normally manage once a year for a trim .

    I hadn't been to a dentist for about 8 years when I started having pain in a wisdom tooth last year . I ignored it for months and ended up having to have an extraction so my goal for this year is to attend regularly if I can to stave off the need for further treatment .

    It's a combination of the AG and Fibro that keeps me at home I think . The Fibro pain is worse when I'm tense and I know going out makes me tense. I also get very light headed when I'm out so it's a vicious circle .

    It really did hep to read your blog , so thank you.

    Helen x

  • Hi Helen, Yes, I have Fibromyalgia, but my first proper diagnosis was Clinical depression, followed by Bi Polar type I. I'm also close to being diagnosed with ME, which depending on your Dr's point of view, is practically the same chronic illness as Fibro. So you're not alone.

    I have recently finished a course of CBT too, for my underlying anxiety and panic attacks. I was diagnosed agroaphobic years ago, and still suffer particularly in large towns and cities, but strangely am fine if in the countryside! Perhaps I'm allergic to people! Although I enjoy others company, so none of it makes sense.

    Nice to know I'm not alone too.

    PP

  • Hi Lynn,

    I'm already on Lansoprasol which I have to take in the morning an hour before eating or drinking , the problem being that it only lasts around 10 to 12 hours and of course by bed time it's ceased to have any effect. I then resort to gaviscon ( which I also get on prescription )

    I think the best thing I can do is get the house move out of the way ( in 3 weeks time ) as best I can, register with the GP in Hampshire and then try and sort things out one by one . I've used this GP when staying at my fiance's as a temp patient and they seem pretty good , so I'm hopeful I'll get somewhere .

    Just having other people to talk to who know how I'm feeling is a huge relief . I also have an adult autistic son to care for so my stress levels rise pretty high on occasion !

    Thank you , I'm so pleased I found this site .

  • Hiya as well as having fibromyalgia i also have hypermobility syndrome, ME, vitamin deficiencies, IBS, Sleep Apnea, Reflux, Severe Asthma, Chronic Daily Migraine and Depression

  • Hi all, most fms suffer from a whole host of other ailments as well, which is very frustrating as it can be quite relentless at times, where there isnt a day that goes by without some pain, fatigue, itching,going on, as you know the list is endless.At least we know we are not alone, After having fm for 12yrs i have notched up a total of 50 plus complaints/conditions i think i know more about fm than the doctors,We may look well but it doesnt mean we are, only we understand what its like at least we have each other. Best wishes all, you are not alone united we stand x

  • Oh yes forgot restless legs too, and not just at night.

  • Thanks all.

    primpixie, agoraphobia is the pits especially when you have a host of other problems going on, because it makes it so difficult to attend ongoing treatments . I can't even get to the hair dressers first time on occasion !

    I can't cope with crowded places and places with bright lights ( such as shopping centres ) , the lights and that " hollow " , echoey noise drive me mad and I often have to leave . I used to be OK travelling by car , but after an accident 2 years ago I now get panic attacks in a car too . We weren't seriously injured , but the car was a write off and I guess I'd always felt a car was my safe place and now it isn't.

    I'm lucky in that my fiance's mum was a sufferer of AG so he is very empathetic , my ex husband didn't believe in it !

    You're right shiron , looking well can be a draw back and I know some people with Fibro have been accused of being malingerer's because they look healthy . It's the same for my son who is autistic. He looks fine, but his brain is wired differently and he exhibits odd behaviours in public sometimes , some people don't understand, they just condemn.

    Brujah , it's awful when you think about it, that we have so many different problems going on , you just don't get the chance to deal with one thing at a time. I hate giving in to illness but some days I'm fit for nothing ( most days in fact just lately ) . I'm proud of myself these days if I manage to cook a dinner and wash up whereas 20 years ago I was fit and healthy . I'm 48 but my 75 year old dad is fitter than I am !

  • Hi

    i have angina and a degree of heart disease. i also have herniated discs in my spine, they crunch when i move sometimes!

    i work full time, fortunately i am a manager so manage my own diary etc which helps greatly.

    since my husband left me 2 years ago i do spend most of my weekend either asleep on the sofa or lying in bed trying to build up my energy levels for the week ahead.

    this doesnt help with the depression as i get very lonely, it all seems a bit of a struggle at the moment.

    i have a blue badge which helps with shopping (thats when i have the energy to go). i will be looking into DLA as i think this might enable me to cut down on my work hours and get a better life/ work balance.

    i refuse to let it get the better of me, so when i do have a holiday, i go out and do whatever it is i want to. i always make sure i have a couple of days at home to recharge tho.

    I'm always concious that there is always someone worse of than myself, so this helps to keep me motivated.

    take care

    kx

  • hi just to say you are not alone I have had fibro for over 15 years i also suffer asthma and copd then there's cfs and depression and anxiety and although in the main i have agraphobia under control i still do not cope in crowded places i have a slight heart murmor and terrible ibs last night i had the worse case of dehydration i have had in a long time it kept me up all night i had to drink pints and pints of water to unlock my bowel when this happens i get sevre pain in neck and jaw it is agonising i also have oesteo arthritis in lower spine and a slipped disc if you have problems with pain relief because of your bowel ask your dr about fentanyl patches they go in through the skin and don't upset your bowel like you i was in the early stages of my relationship 15yrs ago when i was first diagnosed with lung disease and fibro i said to my partner that he didn't sign on for this and as he had two young children to care for i would understand if he walked away and that i wouldn't blame him if he did he told me not to be silly . 15 years on we are still very much in love we have no love life to talk about these days cause of trouble down below as well as all other probs yes it does feel sometimes like it's one thing after another but there is good days between the bad and instead of a lover he became a lover and carer if you are lucky your partner's love will be a source of strength to help you through the bad times ans still love you as he did in the begining we are now looking toward help from social care and we promise to remember to say when things get bad that we will make decisions about my care together we still enjoy the time we share he will do housework dog walking take me to hospital appointments and comes in with me most times and if i have opps he won't leave til i wake up he has had to clean me up and help me dress i know im one of the lucky ones i know i hear a lot of people aren't so luck with thier partners i wish you luck on your wedding day and i hope your partner turns out to be a kind suuportive caring partner for life xx

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