WILL THIS EVER END ?????: Hi all.....I... - Fibromyalgia Acti...

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WILL THIS EVER END ?????

lavenderheart profile image
19 Replies

Hi all.....I was new some months ago but havnt posted much as sooo fed up with my constant complaints and due to loosing my business of 25yrs in 2010 was told to do claim for DLA altho am officially still trying to be self-employed but have been very down after my gp filled in her part of the form as I have no problems looking after children (we have 4) and no problem getting to the surgery(altho hubby takes me and drops me off at the door but she wouldnt know this as she sits in her office !!! ) now Im not bothering with the appeal for the time being as I would find it far tooooo stressful and am going to try anew male gp weve just got see if he is a tad more sympathetic !!! found it all very depressing lately as Ive gone from being such a busy shop owner to a wreck of a person who struggles thro a "normal" day ...... gp did send me to "chat" with the surgerys "mental health nurse" who was supposed to help who has advised I make a list of all the outstanding things I would normally do with no problems and that is now bothering me ie house that looks like weve been robbed, ironing sky-high, baskets of bills and letters I simply cant face, not to mention trying to do an on-line business since closure of our shop which is not working really as I simply cant do it most days ............ added stress of having to sell our beloved family home we have been restoring for past 10yrs but that isnt happening any day soon due to current UK housing market.............we have run our own shops since 1990 and probably quite proud to be self employed therefore we are not on any benefits altho do get bit of help with council tax as low earners...........oh dear me soooo sorry to ramble on its all very depressing isnt it !!!! ...................if the health issues could be eased it would be simply wonderful but that aint happening either.....................tried it all and done it all and all no blooming good.............what they diagnosed as IBS is getting sooo bad im convinced its something much worse ....... its sooo bad with the pains in my stomach I can no longer walk more than 5 mins without great pain, the summer hols with 4 children proving to be a killer as I simply cant do the days out of endless walking round theme parks etc even if we did have the funds to do so............need to go back to gp when children go to school and see where we go from here .............at the moment give up all my meds apart from general paracetamols etc as nothing has helped they are just masking symptoms not finding the root cause, just trying some D-Ribose someone suggested for energy but if anyone has any tips on supplements Ide be most grateful.............the vit D check may be worth looking at also.................oh dear me sorry to prattle on sooo much but thanks for listening x x

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lavenderheart
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19 Replies
Celticmoon profile image
Celticmoon

Gentle hugs lavenderheart

I really don't know quite what to say... ... ... but wanted to let you know that I really do feel for you and am sending lots of positive thoughts in the hope that you manage to find a way through your problems.

xx

Ang01 profile image
Ang01

Hi Lavendar Heart, that is some blog and I feel so sorry for you reading your problems. I can't really give any help on your house and business issues but do know It is very important to have a GP who works with you when you have fibro. It sounds like a good idea to change GP's as it sounds as though your current GP is not being at all supportive to you.

You say you have been diagnosed with IBS and I can truly sympathise with you on this as I have also been a sufferer for many years. Before I was diagnosed I can honestly say I too thought it was something more than IBS as I lost so much weight with it I became anorexic although this was by circumstance and not by choice. I have found that getting the right medication and monitoring your diet to see what affects you has been a great help as one thing they eventually found with me was an intolerance to wheat. Although we are all so different that what suits one doesn't suit another. There are also some very good self help books on the market about IBS which I found very helpful.

Do try and see your GP as soon as you can tho Lavendar Heart and go through all the things that are bothering you to at least get them to understand all your problems. I am here if you want to contact me again, you can always PM me. In the meantime try and look after yourself and take care, love Angela xx

julieevh profile image
julieevh

Ohh LavenderHeart your life sounds over-full at the moment; no wonder you are stressed out. You really need some help from a sympathetic GP and to take gentle control overthings.

It is so difficult in this economic climate to make ends meet - I'll have to put my house on the market in a few months - not looking forward to the whole process.

Keep doing the lottery - I'm not being greedy, a nice quarter million would do me nicely!

Julie xx

I am so sorry, life really can be so hard!

Have you had any diagnostic tests for the IBS?

I was told I suffered with this 30 years ago, and have had problems since childhood.

I saw a doctor last year, because I often get bleeding when I use the loo,and she was horrified that I had never had any testing done even after being hospitalised because of terrible pain.

The Docter sent me for a Colonoscopy which showed Diverticulitis.

When I saw the consultant, he said that it was not only that or IBS, but a form of inflammatory bowel disorder, and if things got worse such as extreme pain, more bleeding, or loss of weight, I was to see him again asap.

He gave me dietary info, such as only soluble fibre, no bran or certain veg all fruit to be peeled and pulped no seeds etc, I had been forcing myself to eat all these things for years!

he also put me on meds, which unfortunately did not suit. He was so kind and informative.

I have had a definite improvement just by following his dietary advice!

It seems to me if you have not had testing then you really do have the right to ask, and keep on until you get it.

I do hope that things improve for you, when you are so ill, it can be hard just to get through the day.

Take care, and make sure you see a different Doctor, and it can sometimes be helpful to ask for a double appointment, so that you do not feel rushed, and jot down a few notes, just points you want to raise, as it is easy to forget things!

very best wishes to you,

Cazx

lavenderheart profile image
lavenderheart

Ahh you are all so very kind I know we are all coming from the same place - if someone could lift off this stupid illness like a cloak it would be simply wonderful wouldn't it !! On the whole I fight this as best I can but don't you just get tHose weeks when you give in - haVing no energy whatsoever for the 4 children this summer hols has been a bit soul destroying especially when my 73 year old mother who isn't well herself has had them for a week to take them on trips which has gutted me that I can't do that - think I need a few weeks sicknote if you can get such things for self employed I have no idea !!

A visit to my gp is on the cards for good heart to heart when children have gone back to school ..........thankyou for your lovely kind words x

FionaP profile image
FionaP in reply tolavenderheart

It is good you are going to get another appointment. Do make a list and let them know that you are not coping. Even that the last doctors comments were inaccurate.

I had some problems in my last doctors. Luckily my usual doctor had become the main man and I took my concerns to him, threatening to take my complaint to the BMA if ever I was treated with such discrimination again. The one that had been nasty twice was so, so helpful the next time, even offering to get script to chemist for me. If you get no support from the new doctor too maybe make a complaint to the surgery manager asking if there are any doctors there who will support you.

I feel for you having 4 children and not being able to have fun with them. Maybe some decent medications will help some, a muscle relaxant is my miracle tablet that I could never go back to being without. What medications are you taking? There are tags to see the ones found to be useful, maybe you could discuss this with your gp, good luck xx

lavenderheart profile image
lavenderheart

Ah thankyou cazbaz for your kind comments - I havnt had tests for IBS as my gp says there arnt any its just a matter of eilliminating other things and if nothing else is found seems lie its IBS - have seen stomach specialists twice first time told to give up dairy and caffiene which I have for 2yrs but no better - then had camera up the bottom thingy I presumme for lower bowel which is ok - then lower abdumen scan again ok - my pain is from about 2inches higher than belly button with very sore spot inside great pain even on walking just 5mins along with typical IBS symptoms - I do need to loose few stone but eveN if overweigh your stomach shouldn't hurt if touched or on moving or walking should it ?? This along with ME and fibro make it all hell at times and I do become a grumpy old person ha ha !! ..........gp visit called for !! ...........your supporting comments very much appreciated thankyou x

lavenderheart profile image
lavenderheart

Thankyo Fionap - what meds do you find useful then ? Think I've tried most of them - endless painkillers antidepressants which just make me whoozy given them all up now as I'm no better on them but would be interested in what you find useful - on my phone now and about to go for another restless Night ha ha so will hunt around the site tomorrow - I would have thought my current gp being lady and with 4 children herself would have some understanding but as I don't go in constantly complaining about the things I can't do she obviously thinks I don't have problems maybe I should start making a weekly appointment and bombard them lists of things I can't do see how they like that - ah well we plod on regardless - do let me know your meds - many thnaks x

Ginsing profile image
Ginsing

Morning Lavenderheart,

I know where you are coming from I had to give my buissness up a really smart shop over the road from the cathederal in Carlisle after some 12 years because of my Back and my Fibro. It took me two years to come to terms with it. I missed the work the people the creativeness infact everything about it. Now I except that I cannot do it any more and make the best of my days. You are so lucky to have four wonderful children and I know summer hols will seem long but try and enjoy them !

The idea of making weekly appointments would get your problems looked at , I think fortnightly might be better just make sure you build a relationship with your doctor and they understand your problems. Pain killers and muscle relaxants help often when you start taking them you feel a bit whoosy but this wears of in a few days. I take Duloxetine antidepressant Tegrtol as a pain blocker to name but a few Talk to the Doc Good luck x gins

lavenderheart profile image
lavenderheart

Hi there gins -just having a bit of a down time - sorry you have lost your shop also - we've had 4 antique shops since 1990 but cllosed the last in 2010 ofcourse now there are financial worrys also - have set up website but that is slow and I'm nOt really well enough to keep ontop of it at the moment - duloxetine is the only thing I havnt tried as sadly it clashes with my migraine melts that I just can't live without but gp says its worth putting on backburner - basically they have nothing left to offer me which is very depressing but if I could get my stomach problem under control that would be a good start - 2 weeks till they go back to school then my husband will go gp with me - I have to go back in sept for some test results anyway but its all so downheartening isn't it - ah well plodding on x

lavenderheart profile image
lavenderheart

Hi there gins -just having a bit of a down time - sorry you have lost your shop also - we've had 4 antique shops since 1990 but cllosed the last in 2010 ofcourse now there are financial worrys also - have set up website but that is slow and I'm nOt really well enough to keep ontop of it at the moment - duloxetine is the only thing I havnt tried as sadly it clashes with my migraine melts that I just can't live without but gp says its worth putting on backburner - basically they have nothing left to offer me which is very depressing but if I could get my stomach problem under control that would be a good start - 2 weeks till they go back to school then my husband will go gp with me - I have to go back in sept for some test results anyway but its all so downheartening isn't it - ah well plodding on x

Abbeystead profile image
Abbeystead in reply tolavenderheart

Lavenderheart. As well as ME/FM/CS and other things. I've have bowel problems too.The only thing I have found is by watching your diet. Had every tablet under the sun for my bowel over the many years and been diagnosed with Divertivultis. The burning and pain is indescribable to anyone who has never experienced it. When I get a really bad bout I stay in bed and live just off water for 24 hours,then introduce things like cream crackers,without any spread on,just plain. Dont' touch paracetamol as that irritates me more. I take dihydrocodeine,although it must be taken with food. OK you will become constipated but if you ask you chemist for stool softener he should be able to recommend something.

As I say I do not think there is anything which will help you, you have to find your own soilutions with this bloody thing. This is the remedy I use I can honestly say Paracetamol is a no no for me and its only an opiate which helps, but you do have to prepare for the constipation which I myself would rather have than the rollwing round the bed holding my burning,paining stomach. Porridge is OK to have. But its like having a baby, you soon forget the pain when your OK. I had some chocolate and also ate a few slices of tomatoe also some fresh organge juice. God did I know it. next day, but once I traced back what I had eaten I knew what had done. I'm, afraid its a matter of watching your diet all the time love.

My heart goes out to you. If you try my recommendation and it works, let me know. I'm not medic but just another sufferer and not everyone may agree with me.

Take care.

Avril,Liverpool.X

lavenderheart profile image
lavenderheart in reply toAbbeystead

Hi and many thanks....its good to know you are not alone with it eh !! funnily enough my father has diverticulitis but whenever I mention it to the gp they dont seem bothered...anyway as Ive said going to try new male gp at our clinic see if he is more sympathetic...mind you Ive already had specialists appts and they did was told me no diary or caffiene which I havnt done for years but not made any difference.....I am trying to loose weight and keep rejoining slimmers world which works for a while then the bad stomachs really kick off dont think all the fibre does me good to be honest.....been reading up about what they call "fermenting gut" which is really what I think the problems stem from which solution is to follow stoneage diet with most of your caleries coming from protein which should be fun as I dont eat meat... need to read up more about it but it sure seems to make good sense....also on my slimmers I use sweetners which hubby as an ex-chemist is hugely against as they really are poisens (cant spell sorry ) so might have to give them up slowly......at this rate we:ll end up eating nothing but fish and rice eh !!! ...... I totally agree meds are not the answer......neither is stress of which I have in bundles....I:ll let you know if I find a good solution...........many thanks x

Abbeystead profile image
Abbeystead in reply tolavenderheart

You'd never believe this but since writing that last night have had one massive flare up overnight. Looking back, realise I'd committed a cardinal sin and ate a Kit-Kat last night. And a few days ago took some Fybogel which of course contains oranges and of course anything citric is a no no but hadn't been the toilet for about 6 days and was starting to panic. Anyway woke up with awful pains around right hand side,where your waist is and feeling very acidic,if you know what I mean. Went to toilet but by then the pain had established itself well and truly. Was in 2 minds whether to call an ambulance and even packed my bag. Hung on and got an appointent with GP. She reckons it's an inflammed bile duct,result of having my gall bladder removed some 30 years ago. Another cock up by the NHS (eventually found out it was an ulcer I had and there was only a little bit of sand in the gall bladder). Anyway I digress. She has given me antibiotics and told me to take the dihydrocodeine. If no better in 24 hours come back.Doubt if I will as there's nothing really they can do. Of course then my bowel kicked off and went toilet about 5 times before going doctors.

Think mine has been a bit induced as well as I am a bit agoraphobic since becoming housebound with all my problems and my husband is going up to Edinburgh tomorrow,only for 2 nights (to watch Liverpool FC play) and I panic when left alone,although my family are local. But when the pain kicks in I get really afraid. So illogical because if I was "going" I would be well gone by now. I think the stress of that also contributed to the flare up.

I've given up on slimming clubs now. I cant eat salads and creamy things they advise you to eat and fruit, especially apples give you loads of wind which is no good for the likes of us. Tonight I've had a scrambled egg on 2 waffles, hope I'll be OK - will ttake more painkillers later. Sweetners are out as well so there goes the diet lemonade as well. I stand there looking in the fridge thinking "What can I have" so usually end up having toast. Would love beans on toast but they wouldn't like me. Dont know how I keep the weight on for ther amount I eat. Probably its because I dont get out to exercise and its the toast I eat! Cant take Magnesium or Garlic or any spices for tht matterr or onions.

Must be boring the backside off you so I'll go off now.. Take care. I'm the last person to tell you not to worry - its in our genes and you cant help how you were born, but you have had such a bad time of late it is understandable why you have been so down.

God bless.

Avril X

Abbeystead profile image
Abbeystead in reply tolavenderheart

Oh Lavender. Going to be really miserable now. No Alcohol either. Sorry to put a damner on things. LOL

rainbowdancer profile image
rainbowdancer

Hi Lavender I was self employed with 3 shops and a healing centre and had to give it all up due to CVFS and Fibro and IBS ,the stress of which as you know will not help if you have any of these......... My IBS improved and eventually went when I was told to eat Honey and Garlic clove sandwiches....imagine the horror of that....well I ate them and I was amazed...I had had for a long time ulcers and red sore gumes and tongue,and IBS the guy told me it would help both.....I ate these sandwiches every day ,just 4 little triangles and I now do not have either of the illnesses.

I dont know if you have tried Magnesium for your fibro but it does take the edge off and helps with sleep patterns....If you want I can let you know which one!!

The other point I would like to add is My husband applied for DLA and got turned down we appealed and he got it straight away....get the C.A.B.to help you they came out to us as we could not go to them ,as we were not well enough.

I hope this is of some help to you. love and light.

Rainbowdancer

lavenderheart profile image
lavenderheart in reply torainbowdancer

Well I;ll have a think about the honey and garlic...not a fan of honey but hey if it works !!..........how much garlic do you put on and do you chop if finely or something ?? ..............yes please do tell me about the magnesium I;ll try anything........Im now trying D-Ribose which is supposed to help with energy levels in your cells which is where our problem stems from, only just started taking it so need to take it for a while and see the outcome but anythings worth a go.............I am just sooo downheartened by my own gp who states I look after children with no problem and get to the surgery her comments have made me sooo upset....she really only sees me for 5mins here and there and doesnt know my life if I were to visit her everytime I cant do something I woujld be going in daily .... its not as if I go to the gp when I cant manage to chop veg or do the heavy pans for cooking for the children as my husband just does it, I never really thought to mention it to the gp after all what can she do about it maybe I should bombard them with every little problem theyde soon get fed up of me ha ha !!! .............Im not going to do the appeal for DLA at the moment it seems just more added stress to me but I have been thinking of chatting with the CAB see if they can assist with anything, then ofcourse hubby doesnt want to go to ours here in town cos he doesnt want everyone local to know all our business he says so Ide have to persuade him wont that be fun !!! .....................

It is difficult when you have been self employed since 1990 and I think apart from a week off maternity to have each of my 4 children I had 2wks off sick in 1992 for a major jaw operation ( can trace back this is when my fibro started altho nothing like it is now............it was the op from hell and whatever could go wrong did ended up with MRSA for 6 months you name it !!! ) so weve always been proud of earning our own altho not well off we get by........sadly put all our savings into our house renovations and now sadly had to put it up for sale but hey worse things happen eh !!!

Let me know about the magnesium I;ll try anything once and many thanks for your kind comments x

rainbowdancer profile image
rainbowdancer

Hi lavender the Magnesium is Magnesium Citrate it helps in maintaining proper bone mineralization it helps with controling muscle contractions and nerve impulses. It also helps withEnergy metabolism . I take these but my biggest let down is I forget to take them on a regular basis.....I know when I do take them I sleep better too. Sometimes I think of them just at bed time and so only take the one. It might help you.

The appeal is easier than the application itself and I know what you mean about not being able to do it because of stress but you are entitled to this. If you get higher level you can also get a car. You also get carers allowance even if you manage ....its how hard it is for you to manage that counts.

I was turned down the first time I applied and left it years before I re applied so I know what you mean.

The Garlic I used to have was a clove sliced thin and the thick honey on brown bread I got used to it and it did the trick.....good luck !!!

Keep your chin up and keep in touch...I am new ish on here so not sure how to find people only when they are in a topic...but I will learn. Thank God we can all be on here to support each other....wish I had found this earlier.

Love and Light

Rainbowdancer

Hello Lavender,

I will leave a comment before I read all the messages because my eyes are a bit sore, I really understand what you are going through, I have very little energy and whatever to look after bills etc., I just feel I'm not able, and doing what I before last year, I cant hand over my reins to anyone else as much as I wish I could because everything is in my name. You should when your're not well as we arent (all of us, and I suffer from diverticular disease too which kills me), anyway I think we should be able to put up our hand and just say hold on I'm not well enough for all of this, and put a stop to all financial worries, of course easier said than done, but it would be so good if we could do that, so I wish you well and take care, love and gentle hugs Claire xxxx

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