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fatigue weakness stomach problems

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#1 Helen225

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Posted 04 January 2012 - 09:56 AM

Hello one and all, I have just joined the Scleroderma Society, and this is the first time I have ever posted on one of these forums.

My mum is 77 years old and has had a diagnosis of Raynauds syndrome for more than 10 years with a later diagnosis of scleroderma and hypothyroidism.

I am very worried about her situation as she is suffering with depression, is extremely frail but is unwilling to see her general practitioner. My father is her sole carer.

She suffers with problems swallowing, has diarrhoea at intervals, and lower and upper limb pain – she takes pain medication for pain relief which she says is the only thing that helps. She eats only small amounts and I’m convinced she is malnourished. How much this is a part of her other problems I’m not sure.

She suffers with fatigue and weakness. On previous occasions she has been out and has reached a point of near collapse, but when paramedics examined her, they could find nothing wrong.

At the moment she no longer goes outside the house except when the weather is warm and occasionally my father uses a wheelchair for her. She struggles to get going in the mornings, saying she feels “woolly round the edges”, and struggling to understand things - her memory is very poor.

She has been referred to a rheumatologist in the past, but did not continue to see them, and has “lost faith in the health service” as they seem unable to help her. Her general practitioner told her that she just had to live with the scleroderma. He continues to do blood tests to monitor the thyroid levels but cannot help with the weakness, the problems eating, the pain she has in her limbs and the general fatigue.

So I guess what I’m asking is, what can I do to support someone who is clearly depressed and feels life has nothing more to offer them? Any feedback would be very much appreciated, even so that I can tell her that she’s not alone, and there are people who have similar symptoms. I get the feeling that each person’s experience of scleroderma is very different and that no two cases are the same.

Best wishes to everyone and a happy new year for 2012
Helen

#2 Amanda Thorpe

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Posted 04 January 2012 - 01:43 PM

Hello Helen

Welcome to the forums although I am sorry it is because you're mother has scleroderma. It's not an easy disease to have at any age but I would have thought it's the last thing you need in your 70's.

This is a difficult one because if your mother has given up on the NHS that presumably includes doctors and hospitals so suggesting she see a scleroderma expert will presumably be a waste of time? If you want proper treatment for scleroderma you have to see an expert in the field, I am a patient at the Royal Free London a centre of excellence for scleroderma and I recommend it to anyone.

I don't agree with the thinking that someone with scleroderma should just go home and live with it. Yes, it's true there is no cure or treatment specifically for scleroderma but the symptoms can be treated and from a quality of life point of view they have to be. However, to get any treatment your mother is going to have to see a doctor first, whoever or wherever that may be.

The depression your mother is experiencing is not unusual in response to a diagnosis of scleroderma, its symptoms and the changes in quality of life that come with it. If her symptoms were treated that would help to make her feel better physically which would then make her feel better emotionally. Again getting your mother any sort of psychological support would involve counselling and that referral would begin with the general practitioner I would have thought.

There is help for your mother but she has to want to avail herself of it. Perhaps you or your father could see her general practitioner first, discuss some options, particularly about treating her symptoms, and then either one of you speak to her about it. Perhaps accompany her to the general practitioner as well?

Finally make sure that you get support yourself, scleroderma is a wiley, little critter that gets it claws into family members as well.

Please take care and keep posting.
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#3 Joelf

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Posted 04 January 2012 - 02:31 PM

Hi Helen,

Welcome to these forums!

I'm very sorry to hear that your mother has Scleroderma and is feeling so poorly. You're certainly right when you say that no two persons' experience of Scleroderma is the same, as it is a very complex disease with many differing signs and symptoms. I realise it must be quite difficult to get your mother to agree to see another rheumatologist or doctor and I can understand her reluctance to consult anyone else, given their reluctance to do anything to help her, but she should not have to just 'live with' the pain and depression that she's suffering. I've received excellent treatment from the NHS but sadly many of our other members have not and it is very important to be quite proactive about getting treatment and chasing up a referral to a Scleroderma consultant as your mother's general practitioner and the rheumatologist she saw were unable to help her. This is why we do recommend that you consult a Scleroderma specialist such as they have at The Royal Free Hospital, as a lot of rheumatologists simply do not have the expertise to deal with this unusual disease. Amanda's suggestion that perhaps you or your father could approach her doctor first for her and set the ball rolling is very good advice.

At least you've taken the first step for your mother by joining our forums where you will find a wealth of help and support from a lot of our members who understand exactly how she is feeling. Do please keep posting and let us know what you've decided to do and how your mother is getting on.

:emoticons-group-hug:

Kind regards,

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#4 Helen225

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Posted 05 January 2012 - 04:18 AM

Hi there – thank you to Amanda and Jo for your replies – it’s good to know that these sort of issues can be discussed. It seems the resounding vote of confidence goes to the Royal Free, but at present I think it would be a) difficult to persuade her to ask for a referral and b) difficult for her to get there. The District Nurse has to come to the house just to take a blood test, because she can’t get there in the mornings as she’s too unwell.

I have discussed with my dad whether I could go with her to a general practitioner’s appointment, but neither he nor my mum were keen on that idea. I have also been round the houses with my sister about what we can do to help, including contacting her general practitioner by letter. I live about 25 miles away so unfortunately I’m not so close that I can just pop round every day, or hijack her and whisk her off to the doctors!

Seriously though, I need to read a little bit more about things like gastro-intestinal problems and the issue of swallowing, etc. As I said, I think one of her problems may be malnourishment. I'll be in touch soon - possibly with some more questions.

Thank you and best wishes
Regards Helen

#5 Joelf

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Posted 05 January 2012 - 07:17 AM

............Seriously though, I need to read a little bit more about things like gastro-intestinal problems and the issue of swallowing, etc. As I said, I think one of her problems may be malnourishment............


Hi Helen,

I've included links to Gastrointestinal Involvement, Gastrointestinal complications and Dysphagia (difficulty swallowing) which will provide you with a little light reading and give you some more information.

I can empathise with you; I have an elderly mother whom I love very much but who frequently does my head in........ah, mothers!! ;) :lol:

Best wishes,

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#6 KeiKei

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Posted 06 January 2012 - 07:09 AM

Hi Helen,
I'm sorry to hear about your mum, and empathise.

In terms of your immediate concern with malnutrition, I’m assuming your mother is not taking any dietary/nutritional drinks? I would recommend (from personal experience and current use) nutritional drinks. Much easier to swallow then solid foods. I drink them alongside my tiny meals and on those days my tummy refuses to behave.

I’ve only tried two brands. You can google them easily enough. One I use is milkshake based, but I’m sure I’ve seen soup. These need to be prepared with water or milk.
The other I’ve tried was a ready to drink juice, which I didn’t like the taste of. I think they also do ready made milkshakes. I’m sure there are other brands available if you look about.

Hope this helps.
KeiKei
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#7 Joelf

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Posted 06 January 2012 - 08:57 AM

Thanks KeiKei, for that useful advice about nutritional drinks.

Helen, I've found a thread about liquid diets and Supporting someone who won't eat. Quite a few of our members have replied to it and come up with some useful suggestions which I hope you'll find helpful.

Kind regards,

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#8 judyt

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Posted 08 January 2012 - 03:32 AM

Hello Helen,
I have just read this thread through and see that you are getting some suggestions but I realise it is very hard for you to make any headway. Since your first post arrived here I have been thinking quite a lot about you and your Mum and have to confess that I can't come up with very many suggestions.

I am actually nearer in age to your Mum that a lot of others here. I will be 68 in 3 weeks time and I have had Scleroderma since I was 22, however I did not get a diagnosis until almost 10 years ago, and I can't help wondering if your mother has been putting up with things for a very long time. I get the feeling, from my own experience and research that real knowledge of the disease is quite recent, and as well because it is so rare, most general practitioners have never come across it. Do you remember anything from when you were growing up, like Raynauds or frequent bouts of 'indigestion' and diarrhea. Vascular ulcers around ankles and shins from small injuries are not unusual. I can't help thinking that if this has been a life long situation, as I have experienced, no wonder she is fed up with it all and has lost faith in the health services.

There are plenty of things that can be done to help with the effects of Scleroderma and I feel sure some of them would help her to feel a whole lot better. I do understand how she feels because I have had about a year of feeling worse and at times I wonder what I am going to be like in another 10 years. Fortunately I am in a position to do something about how things are. We have a home which has stairs and a moderately sized sloping garden and I am finding it hard to cope with the up and down. I make an expidition out of going downstairs to do the laundry and ironing and spend most of the day there. Sometimes I think I should take a picnic lunch and not have to come up until dinner time!! Anyway, my husband is marvellous, loves shopping and doing messages but he is not completely well now either so we have decided to sell here and get a house on one level on a small piece of land with virtually no garden. I know how a lot of people in the UK have to live and it is not so easy just to up sticks and move somewhere else but is there anything you can do to make day to day tasks easier?

Since your Dad is the caregiver, you need to think about his welfare too (and no doubt you are really) but it will do nobody any good if he goes down in a heap!! In New Zealand, where we live, core services are based very much on the British model, and here there are a number of agencies who are able to provide help and advice, it is a case of asking for it.
I noticed your comment about the District Nurse coming - she would be worth talking to. Is there any way you can organise yourself or your sister to go and stay for a few days, ostensibly to give Dad a rest, but to get a better idea of what can help. Here we have a system of Respite care available to Caregivers who are taking the whole load. Either the patient can go into an "institution", for want of a better word, or a relief helper can be paid for. Maybe you could be the one to help.

When it comes to your Mum, are you sure she hasn't had a small stroke which is affecting her swallowing? I have but it affects my balance. There is not much I can do about that except be aware, but I do believe that Speech Therapists are trained to help with swallowing. What can happen is that when the espohagus begins to soften after being stiff for years, is that it gets floppy and because there is no peristalsis left, gravity has to do the job. I am plagued by hiccups if I am not careful. My food has to be soft and almost mushy. I love tomato sandwiches - which lots of people hate because they get soggy, but I :blush: never eat my crusts.

Keikei's comment about nutritional supplements is a valid one. A few of years ago I had surgery on my stomach and had to be on a liquid diet while it healed. The prescription 'milkshake' type supplements were very palatable. I think they are better than over the counter supermarket ones. Another thing I did was dish up a meal, then put the whole lot into the blender and eat it a bit like soup. Years ago I was advised to eat what I love and not to worry about the cholesterol and calories (I am too thin anyway most of the time) so creamy cakes, ice cream and soft white cheese are always available in our house.

I would like you Mum to know how the rest of us cope, that yes, in a way she does just have to live with scleroderma, but that doesn't mean suffer from it. It is possible to make life easier and bearable. I guess getting her to read these threads would be like asking her to fly to the moon!!

Best wishes and warm hugs to all your family.

JudyT

#9 Helen225

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Posted 11 January 2012 - 08:40 AM

Hello folks - just wanted to say thank you to everyone for their positive suggestions and comments so far - also the links to other threads, which are all helpful and informative. It's very interesting to read about other people's daily challenges and how they cope - definitely puts things in perspective.

Judy's comments ring true in a number of ways - especially about going downstairs - and making an expedition of it! I certainly think my mum has had the symptoms for far longer than first thought albeit without being diagnosed.

The nutritional drinks / supplements is definitely a good idea - I think I'm familiar with those items referred to and so will pursue that line.

In the meantime, thanks again.

Best wishes to all
Helen