Nearly had enough

[stevieg]

Hi folks

Im only 39 and I've got a family of 3 and a lovely wife. I have Raynauds and scleraderma for 3 years. The pain and time off work is really bad. I have just about had it, don't know what to do.

[Hidden]

Hi Stevieg, join the club, yesterday saw the Neurophysiology Department, have already asked 3 times in 18 months to have my feet amputated.

[Blue-Bunny in reply to Hidden]

>.> If it wasn't so painful, this would be funny

[Hidden in reply to Blue-Bunny]

Well if my intense pain amuses you - so be it..

[Blue-Bunny in reply to Hidden]

I know exactly the problem, except I get it in my hands too. From an outsiders perspective it seems like such an extreme reaction, comparable to taking a rocket launcher to clear out a wasps nest.

^-^;

[Jessie122 in reply to Hidden]

Hello CardiffLady, please do not leave the forum. You have obviously been in a lot of pain and have become exhausted and very down to be asking for your feet to be amputated. I sympathise with you as I know how exhausting chronic pain can be. I will not bother you with my problems at the moment. I have a very supportive GP. Perhaps the professionals around are not as supportive as they could be? Let us know more about you and your family and the professionals that help you.

Best Wishes

Jessie122

[zenabb]

Dear Stevieg,

I am 83, I have 4 children and 12 grandchildren and I have worked until I was 72. For me to be able to help you I need more detail about how you are affected. I understand that you feel down, I have several times. But there are ways to cope. Tell us more. I am afraid CardiffLady is too negative.

[Hidden in reply to zenabb]

Zenabb I had meant to be negative but realistic. I interpreted Stevieg comment as though he was alone. Whereas I note others interpret it as "end". I apologise for stating my own personal truth and facts.

I have decided to now leave the site. Best wishes to all.

[stevieg in reply to Hidden]

Cardifflady

I appreciate that you have told me the truth, as everyone has been telling me everybody is different and has various problems. Don't leave the site as I can assure you it has helped me so much over the past 36 hours. Please take care.

[smiler2012 in reply to Hidden]

Hi CardiffLady

I hope you reconsider your decision to leave this site as your input in invaluable.You take the time to read and respond to many comments which lets members know that there is someone out there taking notice.

The reason for a site like this is surely to respond to a comment honestly and you have done this with a passion.

If you do decide not to reconsider please take care.

[graygirl1 in reply to Hidden]

CardiffLady, what's this nonsense about you wanting to leave this forum? No way! You contribute much and I for one thinks you're great. You are honest and say it the way you feel which is what this is about. I am sure Stevieg has taken no offence to anything you said about your own situation which you have a right to comment on. Cheer up CardiffLady, we love you, please don't go?

We need to know how you are and how can we if you leave.

graygirl1

[smiler2012]

Hello Stevieg,

How brave of you to say how you are feeling.Those few sentences touched me so much.

I am so sorry you are feeling the way you do just now and I am sure it is not the first time.

As zenabb said, more information about how your illness affects you and your loved ones may enable us to help you over this crisis.

This is such a complicated illness and it affects us all differently.Our circumstances in our work and family life are so varied that we cannot compare on all levels our means and methods of coping with it.

I am 68 and was diagnosed 13 years ago but I was told I had had it a very long time.My diagnosis helped me as I was always wondering what was happening to me.

I retired at sixty and unable to do things I once did I am learning new things.

It is not easy to remain positive all the time,that is too much to expect from anyone,even a well person.

If you are able to write again Stevieg please do.In your own time when you are ready.

Thinking of you.

[stevieg]

Thankyou Zennab and smiler2012

Kind words from 2 lovely people that I've never met. I am taking the maximum amount of Tramadol and Fentanol patches that I am aloud to take. Also taking viagra,folic acid, esomeprazol, bonasten, methatrexate and I go into hospital every 6 weeks for 3 days for illoprost infusion. I am still in pain, my immune system is non existent so I get every infection going which leads to time off work where I've been for the last 23 years but they are starting to get fed up with me, I work outside which doesn't help. I've already tried once with an overdose but ended up in hospital for 3 days. I love my three girls and my wife so much but can only see this getting worse. Not looking for sympathy, just somebody who has been here.

[zenabb in reply to stevieg]

Your three children and your wife will be badly affected if you end your life. They will feel that you have deserted them, that you did not really love them because you left them, and they will feel guilty all their life. Your role as a father figure will be badly dented. If you really love them don't do this. Find other solutions. For example can you move to a position indoors in the company you work for? Can you work part-time? Tell us more and more and let us help you. You are not on your own. When your wife and your children help you, thank them always.

[pamela2 in reply to stevieg]

come off all the med's, clear your body boost your imune system again,,vitamins,q10 , i think u have too many pills and they probably reacting against each other and causing depression.... i founfd out that the type of blood pressure tablets increase the effects of raynauds so had them changed...dont depend on just the doctors as i have found with my own research into all the stuff they give u....hope you feel better soon

[smiler2012 in reply to stevieg]

Hi stevieg

I know you are not looking for sympathy so I am going to give you some praise.What you are going through must seem unbearable.To be in the same job for 23 years and working outside with this illness shows extreme determination and resilience.

You seem to be a very responsible person.

Is it possible to change to a post indoors with your current employer?They must think highly of you and maybe with some support from your GP or specialist could offer you something else.

I understand you thinking that your employers may be starting to get fed up with you but this sometimes comes from our own thoughts of feeling guilty for having time off work for treatment.Your treatment is essential to enable you to go to work the rest of the time.

These guilty feelings also affect our personal relationships, we think we are a burden to our loved ones.We have to make sure we are listening to them about their concerns and every day activities.Try to keep life as normal as possible for them.

I do not know a great deal about all the medication you are taking but as we all know they have side affects,sometimes on our emotions.

When you overdosed did anyone at the hospital refer you to someone to help you?

If help was offered ,did you accept it?

I always find it difficult to show when I need emotional support but it is essential as it makes a huge difference when managing our illness.

Is there a support group in your area?It could be a help to you and your family.

Sorry if I have rambled on a bit stevieg.Take care.

[stevieg in reply to smiler2012]

Hi Smiler2012

I got refered to a psychologist for 6 weeks but at that time I just wanted her to go away and it was easy to tell her what she wanted to hear. My job consists of going round various building sites to check work being done as I am now off the tools but there would be no place indoors for me. The pain in my fingers and joints is bad enough but to get just about every bug that's going round just finnishes me off. I would love you to see my lovely girls, especially my beautiful 3 year old who just wants her dad to play with and give her cuddles but most of the time I am in hospital or in bed unwell. Sorry to sound so depressing but don't know where to go from here. Take care.

[sandycharlie]

hi i hope you are feeling better, i have raynauds also i was only recently diagnosed and i am in a lot of pain in my finger tips i am trying new meds but pleased to say this site is a big help to me as some days i cry with the pain but then i come on here and it really helps to read what others are going through and you know you are not alone big hugs to you..x

[zenabb in reply to sandycharlie]

You need to be well treated to lead a life that can be called a life. Do you have a rheumatologist? Start there. When you feel low, cheer yourself up. Give yourself a bunch of flowers or/and a treat.

[flickchick777]

I so know where you are!!! There are days that I am so done with being in pain, and not being able to do the things that I have done regularly in the past. But then I try to remember, that though I am suffering, and that most have no clue what I am dealing with, it really could be worse. I know it is hard to see that right now, but try to focus on the things you have, and that you can still do instead of pain and limitations. When I do, the pain does not get to me as much, and it is easier to deal. It really is a matter of mental perspective.

Hang in there!! You are not alone!! =)

[Jensue]

Hi Stevieg,

We are all so different with how the symptoms affect us and I can understand how down this can make you feel. I have raynaud's & scleroderma & my work got very annoyed because of the time off work but you can get through these bad times with the help & support of others by talking to others who understand your issues. I did get very depressed & had a lot of nerve type pain and so my GP started me off on Amitriptyline which did help with the pain and of course the depression. I'm thankfully clear of the depression & feel so much better since I took early retirement & have not got the stress anymore. Stress is another big factor in exacerbating the symptoms of Raynauds & SSc, I do Tai Chi which helps me to relax & keeps my joints moving.

Trying talking to your GP about how you are feeling, perhaps anti depressants could help or even CBT.

Please take care & know we are all thinking of you.

[stevieg in reply to Jensue]

Thankyou jensue, I am also taking 40mg of citalopram for depression, even this morning trying to get out of bed is a major task. The amount of pain is getting me down. I know there are others a lot worse than I am, but just cant see any light at the end of the tunnel. Thankyou for taking the time to help.

[lollipop]

i am 49 and recently had to retire as i could no longer do my job. I hope things get better for you stevie, i can understand your pain and how it gets you down. Sometimes things get unbearable but being here for my kids keeps me going, sending you a big hug

[overnighthearingloss]

I have only recently noticed that there is a possibility of sometimes improving my symptoms by changing aspects of my diet.

I have personally noticed that Raynauds attacks seem more frequent and severe if I have been drinking lots of coffee or tea.

If I stay away from it for a couple of days there seems to be some improvement. Obviously with the winter there is a tendency to take lots of hot drinks. I have been substituting with honey water. A spoon of honey in hot water.

If you are a caffeine addict, it may be easier to reduce the amount of coffee/tea rather than cutting it out completely at once. But its worth a try.

Re work. If you are in a union or have a possibility to join one it may give you some extra clout with workplace issues. They can be useful at times.

[nanadx20]

Good Morning stevieg...try to take it one day at a time. I have had symptoms for many years but it was a little over a year ago they gave me a diagnois. At first I stuck my head in the sand and tried to pretend it would all go away..that lasted a couple of months but the symptoms simply didnt go away... Talk to your GP and R. Arthritis Drs..try to go for short walks with the family...Find the things that make you laugh, notice the beauty in your life..and just take it one day at a time...

[Blue-Bunny in reply to nanadx20]

I completely agree with this. The way I manage is not to think of it as a problem or an illness but more of an inconvenience...downgrade it in your mind and prioritize the things that do make you happy.

[zenabb]

I believe in diversion. As far as possible I have activities (mental, intellectual) to grab my attention, and or see people I like and find interesting. It diverts me from my pains. My pains are not my friends.

[patsyb]

I really feel for you, living with this condition is certainly no picnic, but with the advance of medication, who knows in the near future, they will come up with something to help all sufferers. Chin up, keep warm, you will get through. Think of your lovely wife and children. The warmer weather is on it's way. I saw a lovely song thrush in the garden this morning, life is worth living.

[kaabbechjajogefa]

Dear Stevie I have also been as low as you and felt as if the pain was more than I could cope with any more. I have no miracle answer for you I wish I had and I still have days when the pain is unbearable but then I look at my grandchildren or my grown up children and I know I could not leave them to cope with my taking my own life. Your children and wife love you we on this web site care that you get well or at least better than you are now.

Ask if you can go to a pain clinic I dont know where you live but my local hospital run one it helped. I had to take early retirement from a job I loved and had worked at for 34 years I have found that doing something I enjoy helps me think less about how much pain I have always thought that was physcho babble but it really works I go to a start art class twice a week where I think about nothing but what I am doing is there something that relaxes you that you can still do and take some joy from doing it ? try it when you are as low as you are anything is worth trying And remember you are never alone people do care about how you are and wish you well.

[nanadx20]

Ask for help from the family...I finally started asking, and things changed, because no-one knew what to do to help...the grandkids will brush my hair..we will get in a line tallest to shortest and brush each others hair..or massages..when they try to 'pull the blood from my heart to my fingers & toes when they have turned white...hot showers/baths...

[wartsandall]

Hi Stevie......I'm so sorry that you are feeling so low....... I can relate to all of the feelings and emotions that you are experiencing......I struggled for a long time with aches and pains, plus negative comments from management and my work colleagues in the NHS......eventually I was forced into making the decision to apply for ill health retirement.....my application was successful and now I am retired.....Now that I am no longer working, my stress levels have decreased..... I have also had my pain medications reviewed by the pain team...... I am now coping much better....Since taking my retirement I now have the time to invest in my own health and time to enjoy my home and family.........although I have taken a big drop in my income I can now see what is more important in life than material goods.....My family and I are much happier, my husband loves the fact that I am at home.....and I am able to look after myself, I am well rested and able to cope with my condition....Look at the whole picture of you and your family,....... prioritise what is most important for you all,........ explore all your options and seek advice and support from friends, family and professional agencies......If you are unable to stop working, consider having a career break or a complete change of career.... ask your specialist for a review of your medications, you may need something changing or adding in.......please take care and remember that you are not alone, we are all thinking of you

[grannyannie]

So sorry your feeling so down, can't add anything which hasn't been said already. It must be very difficult with young children and an outdoor job. Just to say I wish you well and remember people are thinking of you. I'm sure the children must make you smile and laugh and hopefully this helps. Take care and be sure others are thinking of you.X

[Hidden]

Hey.... Come on now get a grip!!!!.. Harsh??.. Yes!!

But, even thinking what you were considering just ain't the way to help either you, your lovely Mrs or those 3 tinkerbelles of yours now, is it??

What do I know? Well I know by your comments that you are going through exactly what I have endured with my own condition this last 20 yrs, being 35yrs old when diagnosed with Raynauds and Diffuse SSc, followed by PF and RA. I understand only too well your unbearable pain, fears and worries. But I know too that due to trials and research this condition is better managed now than 20 years ago and research is continually ongoing. I volunteer a lot, it helps me knowing it will hopefully help others one day, cross fingers (Mmm, well I would if they weren't so bent)

I know too what doesn't help is self pity and although folks being sympathetic is appreciated, sympathy just pulls one down even further. So, no sympathy from me, lol!! When in pain and really low I admit I feel I wanna top meself too. Obviously though I've either failed at my bungled attempts or managed to win over my negativity, the latter being the answer... just in case ye wondered. Besides, I think taking any more pills wouldn't have any effect on the likes of us anyway, and I believe the gas oven method just makes ye sick.. unless yer smoking while yer head is in it, ha ha!! Crikey, had I ever succeeded I wouldn't be here today... after raising 4 brilliant children and the younger, of whom is now 24, on my own for the last 14yrs (Won't get into that story bar to say it didn't help my condition much at the time, but I've never looked back, lol)

Admittedly, its been difficult, like most of the members on here (who have given such good advice and support to many inc on your post) but I have survived. Asking for help was not easy for me, now it's very easy lol. Also because of being only 41yrs when made medically retired from work it was very hard financially, emotionally and socially at first. But I claimed every benefit I was entitled to and at least then could use my good days with my kids instead of work. Fortunately I recieve proper care as soon as needed which often leads to a week in hosp and by understanding my limits but enjoying what I can do, when I can and however I can. And luckily I have the love and support of my friends and family. I may not have been able to do as much with, or for, my children as most other mothers enjoy (or endure maybe, ha) which has been very upsetting and hard, but I have recently not allowed the probs of my illness prevent me from delighting in my daughters wedding day and I am now enjoying a second helping of the things I could enjoy and do, this time with my 4 adorable grandchildren whom I might never have met if I'd of 'had enough' !!

So come on, stop feeling sorry for yourself and give up on wanting to give in. You will be glad you did when your little girls are walking down the aisle...Happy that their dad is by their side x

[graygirl1]

Hi stevieg, looks like everyone in this "Family" are rooting for you. It is very hard to cope with continuous pain and discomfort but please, please, just hang on in there. Your family would certainly not be better off without you. I'm sure they love you to bits. The little ones may not understand fully what dads going through but they know you love them all but that you're just not well enough to kick about with them at the moment. Just give them and your wife as many smiles and hugs as possible and accept theirs love with grace.

Stevieg, as long as you have life there's hope. Medicine ie improving all the time so please take one day at a time.

Regarding your work, maybe your boss and mates just need to be educated about your condition to be more understanding. Is there any way you could find some leaflets to leave in the staff room? Have you been able to talk with your boss/es about your illness?

I worked in the health service for over thirty years and beleive me not everyone understand the suffering of colleagues even in the NHS.

Talk with Mrs Stevieg, you may have to give up your present job on grounds of ill health. I would urge you to join a union asap. I don't think it has to be a workplace union. Sounds

as if you may need help and support on the job front.

Please try not to stress too much as this will make you feel worse. You and your family will get through this with the love you have for each other and some professional support. It is a scary position to be in, I've been there and here I am still, happy and contented inspite of my limitations through pain and very little money.

There is light at the end of the tunnel, a cleche but true. All the best to you and family. Keep in touch, let us know how you're getting on.

graygirl1

[alwaysfreezing]

a day at time stevieg hope you are ok best wishes

[nettie545]

Sorry you're feeling at the end of your tether! I know the feeling! Living with constant pain is so difficult I know. I'm sure you've had many suggestions from people and your Doctors must have tried most things. I will pray for you. I have Raynaud's as well.

[graygirl1]

How're you doing Stevieg? Hope you're feeling better than you were a few days ago. Just be good to yourself and your family and please be assured that you are in our thoughts.

Keep us posted and pass on best wishes to Mrs Stevieg and the little ones. Wishing you more comfortable future.

graygirl1

[stevieg in reply to graygirl1]

Thankyou so so much eveyone for taking the time and giving me so much support over the last couple of weeks, It's good to know there are so many kind people out there unfortunately going through the same conditions and pain as I am. Looking at things a bit different now, life is worth so much more when I look at my three beautiful girls and gorgeous wife. Not getting into that state again hopefully. Time to stop feeling sorry for myself and get on with it. Thanks again to everyone who helped me, must go now my three year old wants to do a jigsaw.xx

[graygirl1]

You've made my day Stevieg. So happy you're feeling better. Massive respect! You will have some down days and nothing wrong with feeling sorry for yourself at times. You're only human after all, but just cheer yourself up by looking on the bright side, having life and your wonderful family around you. I have a four year old Godson whom I love with a passion so I know a little of how you feel when you look at your little ones. Lucky you! Regards to all your family. My thoughts are with all of you.

[stevieg in reply to graygirl1]

Graygirl1

Thankyou kindly for everything you have said in the last couple of weeks. I needed someone and you lovely people were there for me, I will never forget, hope everybody has as good a weekend as I plan to have with the family,

Speak soon.

[living-the-dream-ssc-ray]

Hi Stevieg and everyone..... I was 24 at the age of my diagnosis of diffuse scleroderma and raynauds. At the age of 31 I had to retire from my practice as a barrister and return to the town where I had grown up but not lived for 13 years. I am in year 16 of this diagnosis, soon to be 40 (incase you hadnt done the maths haha), housebound during the winter and unable to work at the moment..... I have just had a tooth extracted due to the poor circulation in my mouth not being able to fight infection..... so in essence I understand a little of what you are going through with your diagnosis. I would like to share this poem with you and everyone, it has certainly helped me during some of the more challenging times on this journey...

THE DON'T QUIT POEM Anonymous

When things go wrong, as they sometimes will,

When the road you're trudging seems all uphill,

When the funds are low and the debts are high,

And you want to smile, but you have to sigh,

When care is pressing you down a bit,

Rest, if you must, but don't you quit.

Life is queer with its twists and turns,

As every one of us sometimes learns,

And many a failure turns about,

When he might have won had he stuck it out;

Don't give up though the pace seems slow--

You may succeed with another blow.

Often the goal is nearer than,

It seems to a faint and faltering man,

Often the struggler has given up,

When he might have captured the victor's cup,

And he learned too late when the night slipped down,

How close he was to the golden crown.

Success is failure turned inside out--

The silver tint of the clouds of doubt,

And you never can tell how close you are,

It may be near when it seems so far,

So stick to the fight when you're hardest hit--

It's when things seem worst that you must not quit.

- Author unknown

[graygirl1]

Hi stevieg. Hope you and your family doing ok and that you are much improved. The "Don't Quit Poem" is lovely. Hope you found comfort in it. Isn't it nice to know people care?

All the best to you and yours.

[moimoi]

I have Progressive MS and Raynaud's with lots of neuropathic pain. For several years the pain in my feet has been awful and my whole body was hyper sensitive (was is loosely said). I was also subjected to severe infections which on occassion I thought were going to kill me. For the last 2 years I have been taking Vit D3 and a multivit every day and I have not had a major infection since.

I also started Pregabalin last year and after a several weeks my body became much less hyper and the pain in my feet is more manageable. This drug is prescribed for MS but I wonder if it might also have an application in Raynaud's.

My father had Raynaud's from a young age after he had to have his right leg amuptated due to an incident with a tram. He managed to bring up 3 kids and lead a full life and when I feel particularly stressed I think of him. It is good to have something to reflect on to keep on an even keel - not an easy task.