Scleroderma & Raynaud's UK (SRUK)
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Nere

Recently diagnosed with Crest. Main complaint was Raynauds, and given my age (59) Ordered lab tests. It turned out I'm ANA positive, centomers number also high. Gp diagnosis is Crest and refered me to the rheumatologist. His next appointment is in a month!!! I'm in absolute distress. Having terrible anxiety, unable to eat or sleep. Gp prescribed fluoxetine but had to stop taking it because my mouth became dry. I live out of my country and has no friends here. Feel so depressed and fearful that all I can think is death. Need some encouragement since I have a 17 years old that has autism.

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Hello Nereyda, welcome to this site, we are a friendly group of people ready to listen and help if we can, you are never alone on this site. Try not to panic, and whilst you are waiting to see your rheumy, make notes of any symptoms you are aware of, even if you think they are irrelavant. Take care, x

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Thank you fairy. I'm trying hard since I know it only makes things worse. Unfortunately, I'm anxiety prone which I think caused my desease in first place. Finding this group has been a blessing. It makes me feel less isolated. I'll make sure to write my symptoms while waiting for the appointment with the rheumy. Hope you are feeling well today, x

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Hi there, I am sorry to hear that you are in such a difficult situation at the moment. Please look through some of the previous posts because there are lots of posts from people who were newly diagnosed, or awaiting diagnosis and trying to make sense of what was going on for them. Don't go searching on the internet and scare yourself silly. Stick to reputable websites, and recognise that everyone is different and just because you have a diagnosis it does not doom you from the start.

sruk.co.uk/

Telling you to try not to worry sounds a bit ridiculous I know...we all worry about the situation but in this instance the stress can make the situation worse as it can cause your already reactive immune system to be even more active. Try and be kind to yourself. Look after yourself the way you would your son or another good friend. Take time out to relax and do enjoyable things. Eat a good diet, get lots of sleep and rest as you need it. Easier said than done but you need to prioritise your health. By looking after yourself you indirectly look after everyone else.

If there are any specific questions you have about scleroderma post them on here and everyone will help you out.

Lucy xxx

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Hi Lucy, Your kind words mean a lot to me. They gave me hope which is what I need more at this time. I've read some of the posts of newly diagnosed. Before, as you said, I was just getting scared in the internet. Right now I don't have much experiencia or knowledge about. Before my diagnosis , 2 weeks ago, I had no idea this disease even existed. I think I'm going to post lots of questions since this forum ibecame my emotional support. Hope you're feeling good today. Xx

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Good morning Lucy. I've read many of the replies you gave people. You extend your arm to reach whoever is in need of an advice and share your knowledge with loving kindness. I just wanted to tell you that for someone like me who lives far from family and friends, the support we get in this group is lifesaving. Thank you, Lucy, for your presence

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I'm having a get together/meeting in Birmingham on 01st August, depending on where abouts your are, you're more than welcome to come. It's nothing fancy, just an informal get together for a drink, eat if you want etc. It's right next the train station to make it easier for every one to commute in, and there are 4 of us at the moment. Partners/friends are more than welcome to take the stress out of it. Hope this helps somewhat.

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Hello avtargill31. Thank you for the invitation. Very kind of you. I would love to join you and your friends, but I live way too far in United States (Illinois). Just being invited made me feel included since living out of my country, far from family, makes me feel even more isolated. It comforts me to know that after diagnosis there is life, joy of living. Hope you're feeling well today. I'd love to know how was your get together. Xx

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Hi, opps, yes a bit of a distance from us lol. I'm living the dream here at the moment lol. I as everyone else has good and bad days. I'm trying to stay positive as I think it helps a little mentally etc. Can I ask where you're from as you say you're out of your country? I think that would be the loneliest place on earth without friends and family. I like to be around familiar surroundings and stress when I'm not. That in itself could be a bad idea. But this site is pretty good the be honest. You never know about the meeting in August, there's always Skype if you fancy joining in, not to sure on the time differences though, so that might not be a good idea after all lol. There's always folks to chat with, so here when you need us. Speak soon x

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Hi, I thank God this group exists. Joining the party via skype would be kind of hard. British accent gives me some trouble, since my English isn't very good and I'm used to the American one. Anyway, thank you for the offer. I'm from Colombia, and we move to the United States because my husband found a job here. The idea is that my son, who is in the autism spectrum could have better opportunities in life. Back in my country his chances to get an education and find a job are none. Movining back is not an option, so I'll have to find ways to connect with others. By now, this group has been a blessing. Please keep in touch x

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I don't normally post a lot here but read the comments that folks leave. You're more than welcome to drop me a message whenever you feel like and I'll always reply. Take care and hope it gets better soon x

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Thank you avtargill. Your offer is very kind. Reading the comments folks leave is what I do lately. Take care and I'll keep in touch. Xx

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I went to Birmingham yesterday and made sure I found the meeting venue. If anyone is any doubt (which exit from the station to use), ask a policeman - they know everything!

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Hello Jen, Thank you for the information, but I live in USA. Avtargill invited me to join you guys at Birmingham before she knew I live a bit far from there. I hope you'll enjoy the get together.

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Hi, I was diagnosed last year, also at the age of 59. I don’t know too much about my blood test results only that I had pos ACA. I’d had Raynaud’s for a very long time, swallowing problems, fatigue and shortness of breath. All of the checks I had done were in an acceptable range i.e. didn’t warrant any meds. My lung function is low but okay and I have slight thickening in my esophagus. They do say stress and the worry can make it worse. I know it’s easier said than done but try not to read too much into a lot of the information available on the net. From what I’ve read CREST progresses very slowly. When you see your Rheumatologist ask if you can arrange an appt with the Rheumatology nurse, hopefully she’ll be able to put your mind at ease a bit more. For me, there has been no change in how I am or how I feel since that first diagnosis in May last year. Hope that helps in some small way x

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Hi Dawzelle. Thank you for your encouragement and advice. It means a whole lot in this moment. Stress and worry are definitely making things worse for me. Before diagnosis I only had Raynauds. Now, my rampant anxiety brought heartburn and dry mouth to the list of symptoms. I'm trying hard not to google incessantly for escleroderma. It only makes me more anxious. I'll ask if there is a reumathogy nurse for getting an appointment. I live in United States and I'm not sure if they have this service. I'm glad to hear that your symptoms are stable. Thank you again Dawzelle. I hope I don't sound too dry. English is not my first language and it makes more difficult to express feelings. Xx

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It’s no problem Nereyda, I hope you get some answers soon x

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Thank you Dawzelle. Your kindness makes a rough day better. Blessings

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I'm in the U.S too. I already have Crest to add to my list. I'm on no pain meds either. My Rhem doc gave me 2 different pills on each visit and my body couldnt handle it. I'm on no meds now. I'm been on Kallawalla instead. My doc has so far been no help! I wish I lived in the UK

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Good morning Susan. So sorry to hear that your rheum hasn't be able to help you control your pain. Would you mind telling me what is kallawalla? I'm new and still don't know much. Does it help you to manage pain? Where in United States are you? Is there an escleroderma clinic you could go? I imagine those doctors are more understanding and try harder. I'm in Illinois and there are two sclero clinics in Chicago, but my insurance only covers doctors in their network so I won't be able to go until next year when I'm planning to change my insurance. I was diagnosed three weeks ago by my gp and was refered to the rheumatologist that is going to see me in a month. Hope your pain gives you a break, dear. Xx

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Hi, I've been in chronic pain for yrs. I have Fibromyalgia too. I'm new to Raynulds and scleroderma. It's scary I know that! Kallawalla is an herb I found online. No change since I started it tho. Thankyou for the reply.

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I'm in Florida

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Hi Susan, I'm sorry the Kallawalla isn't working as it should. Hope something comes out that could bring you some relief. At least living in Florida helps to keep Raynauds in check. I'm thinking about moving to Florida to scape from the cold that makes everything unbearable. Hope you get a restful night. X

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Same to you😁 Thankyou! Cmo works wonders I'm doing it next for Fibromyalgia and it will prob help with these other crazy conditions. God bless! Stay in touch

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Hi Nereyda

we all know how worrying it is when you first get a diagnosis but we are all here to help. There is also an American forum inspire.com/groups/sclerode... which you may find useful as our healthcare systems are different. You may also find others to meet up with as face-to-face contact with others is a great morale booster.

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Hi Cowhide. Thank you for the encouragement. I slready joined the inspire forum, and I'll look to see if a find a support group that meets in the area. I sure can benefit of a morale booster. Hope you are feeling well

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Hello Nereyda,

My advice is to keep writing down your symptoms so you can give the rheumatologist a clear picture of what you are going through. What is your first language?

With best wishes,

Tim

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Hello Tim,

Thank you for your advice. Yes, I'll make sure to write down my symptoms. By now, they are quite mild, except for the fear and anxiety that are out of control. Reading posts helps, but since the diagnosis, I can't sleep more than two hours at night. My gp diagnosed me based on my lab results( positive ANA and centomers). I suppose tHe rheumatologist is going to order Some other tests to get the complete picture. I'm from Colombia, so my first language is Spanish. Thank again Tim, it feels good to know that you're not alone.

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No, usted no está solo. Este es un buen grupo al que pertenecer.

¿Puedo sugerirle que averigüe todo lo que pueda sobre los mejores especialistas en reumatología de Colombia? ¿En qué hospitales están y en qué departamentos trabajan? Seguramente debe haber al menos una persona especializada en esclerodermia en Colombia. Debes ser valiente y descubrir todo lo que puedas. Debe ser capaz de ayudarse a sí mismo en la medida de lo posible. ¿Tiene un médico de hogar útil? No sé cómo funciona el sistema médico en Columbia: ¿está nacionalizado o es privado?

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Hi Tim, I'm from Colombia but I live in United States, Illinois. Colombia has a public health system. However it's very inefficient. I'm glad I live here because in any case will be better than the medical care that I'd received if I were living there. Hope you are having a good day

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Hi Tim, I don't know if is completely inappropriate to ask you the reason it took so long to get a proper diagnosis. I thought the lab test were the criteria. Hope you are feeling well

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Just because you clearly have an illness it doesn't mean the National Health Service (NHS) in England will get you treatment in a timely manner. I suppose that obscure rheumatological complaints are not top of the NHS target list.

At the beginning I had to shift from one consultant to another. The one I started out with (July 2007) was faffing about with partial diagnoses (psoriasis, raynaud's) rather giving me a comprehensive diagnosis (Limited Scleroderma). His diagnosis did not fit my range of symptoms. Then my appointment to see the next consultant was cancelled serially three times and it took me 13 months finally to get to see him (Sept 2009). He then started a programme of testing. I didn't get a drug (Sildenafil) until March 2014 (and that was only after I had suggested it). My condition was worsening so I asked my home doctor to refer me to a specialist Scleroderma clinic in London, which he was able to do. Things had got worse by August 2015, when I was admitted to hospital which is when more testing began in earnest. I also saw a doctor at the London hospital in Sept 2015 and he started more tests and advised treatment. I am now under two consultants. I have medication which has now controlled the degeneration - thank god. :-)

I suspect I would have had better treatment under a private medical insurance system. However, I strongly support the NHS, but it has been starved of funds for years because successive governments have failed at the task of telling the people what extra taxes will be needed to pay to improve it.

<Google translation>

El hecho de que claramente tenga una enfermedad no significa que el Servicio Nacional de Salud (NHS) en Inglaterra le dará tratamiento de manera oportuna. Supongo que las quejas reumatológicas oscuras no encabezan la lista de objetivos del NHS.

Al principio tuve que pasar de un consultor a otro. El que comencé con (julio de 2007) estaba dando vueltas con diagnósticos parciales (psoriasis, raynaud) en lugar de darme un diagnóstico completo (esclerodermia limitada). Su diagnóstico no se ajustaba a mi rango de síntomas. Luego mi cita para ver al próximo consultor fue cancelada en serie tres veces y finalmente tardé 13 meses en verlo (septiembre de 2009). Luego, acaba de comenzar un programa de pruebas. No obtuve un medicamento (Sildenafil) hasta marzo de 2014 (y eso fue solo después de haberlo sugerido). Mi condición empeoraba, así que le pedí a mi médico domiciliario que me enviara a una clínica especializada en esclerodermia en Londres, lo cual fue capaz de hacer. Las cosas empeoraron en agosto de 2015, cuando ingresé en el hospital, que es cuando las pruebas comenzaron en serio. También vi a un médico en el hospital de Londres en septiembre de 2015 y comenzó más pruebas y aconsejó el tratamiento. Ahora estoy bajo dos consultores. Tengo medicamentos que ahora han controlado la degeneración, gracias a dios. :-)

Sospecho que habría tenido un mejor tratamiento bajo un sistema privado de seguro médico. Sin embargo, apoyo firmemente al NHS, pero ha estado privado de fondos durante años porque los sucesivos gobiernos han fallado en la tarea de decirle a la gente qué impuestos adicionales se necesitarán pagar para mejorarlo.

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Good morning Tim. Thank you for the extensive response. I'm sorry you had such a hard time getting the treatment you deserve. By reading posts, I had the ithe impression that England's Public Health Service was pretty good. It turns out it suffers of the same problem as the American one. Good thing you're now under good care. Tim, thank you for taking the time to do the translation. Even though my English is not as good as it should, I can read without effort. My issues are expressing myself in English. I any case, I was amazed of the quality of the translation you were able to get with google. Wow! Sometimes I try and what comes out makes no sense.

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Hello Nereyda,

Greetings from England. Here, we just need a National Health Service that expands to keep pace with population growth and changes in demand. I'm glad the translation was fairly accurate. I didn't want to add to your stresses by forcing you to face linguistic challenges !!

Back to 'the Subject', as I understand it, when we are under severe strain - the length of time is not relevant, it could be just a few days, could be a few years - the unconscious body causes a health collapse in order to try to secure the necessary 'down time' it needs to repair itself. The conscious mind notices what's going on, but cannot change the unconscious process. All we can do consciously is to follow our body-mind's promptings and give it the resources it needs. Entropy never works backwards, so we will never get back to the condition we were in - we have moved to a new state. My fingers will never uncurl. My muscles will never lose their stiffness. My face will always look like a gaunt mask. But I am now in a place where the descent has stopped. I have the NHS and my doctors to thank for that, even though it was a long process. Perhaps the NHS is now a 'crisis intervention service'. I feel that I am now in a period of peace, although I can never know how long it will last.

I'll leave you with a quotation from Edward Graham-Barrie who lives in Scotland: "A healer does not actually heal. Rather the healer provides the optimum circumstances in which a person can heal themselves. Thus a surgeon removes an unwanted tumor so that the body may heal itself; a shaman provides an environment in which a person who believes in demons will experience the demons departing. A woodland is surely an ideal environment for healing".

Have you got any woods or forests near you?

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Hi Tim, thank you for your reply. I'm glad you finally got the health service you deserve and have your doctors. It seems to me that as imperfect as it can be, the service that the NHS is much better than what we can expect in USA. Right now, I'm still waiting to see a rheumatologist in a month. I'm experiencing some symptoms that I'd like to discuss with him but I'll have to wait one month. You say that although you have experienced pain and loss, you are now in a period of peace. I'm so glad you are. Does it mean that you can take pleasure in life? Right now I'm so anxious and terrified that I don't eat, sleep or think about anything but scleroderma. Fear is what drives me. I find increasingly difficult to work because I can't put two things together. Living this way is a torture. i feel so frustrated because I'm aware of the detrimental effects of stress . The explanation about the conscious not being able to control the unconscious is very pertinent. Eduard Graham-Barrie's quote is very relevant. It makes lots of sense. Yes, I live by a forest preserve. Do you think is healing?

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Hope you are feeling well today!!

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Yes, I am well thanks. I collected some tadpoles from a friend's pond today and tomorrow i will introduce them to mine and hopefully there will be some frogs in my garden this summer.

I am sorry to hear about your stress levels. I can appreciate that having an autistic son must be a sore trial when added to your anxious temperament. Scleroderma has its own logic, but it can be controlled with medication - in my case Sildenafil (for my hands) and Methotrexate (for the auto-immune response). Lately I have been exploring the psychological side of the auto-immune problem: am I attacking myself and if so why? I go to see someone for EMDR treatment, which is effective.

I think that exposure to the outdoors is very beneficial. I can sit by my pond quietly under a tree for ten minutes and just notice what happens - it takes me out of myself. I have always loved plants and animals. You see all sorts of unexpected things. Also, going for brisk country walk gets the blood flowing and the alternate left-right-left-right pace of walking helps to integrate the two halves of the brain and stimulates thought. If I have something worrying me it comes bubbling up obsessively but then after an hour or so's walking it has dissolved and I can go home more peacefully.

I hope you have had an OK day.

Tim

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Hello Tim,

Sorry I hadn't answered before, but I'm not feeling well. IFollowing your advice, I'm trying to incorporate some woods walking. Yesterday went for a country walk. Just 30 minutes since I didn't want to irritate my feets that feel like burning. I suppose, it'll take time to work its magic. So far, I still can't sleep more than 2 Hours at night. I'll keep taking brisk country walks, and I'll look for a pond to sit by to see if it helps to bring some peace to my mind as it does to you. I'd never thought someone would transfer tadpoles to their ponds. Back home we had bull frogs in the backyard pond and for me it was an annoyance. Glad to hear you are doing well. Keep in touch.

Nereyda

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Dear Nereyda,

What's this 'burning feet' business? I have had years of painful feet but now I have orthotic insoles and the inflammation seems to have receded thanks (perhaps) to the medication.

Re. moving tadpoles, apparently there is a risk of spreading a terrible frog virus, but as I already have healthy frogs in the garden and the source pond (at a friend's house) looked clear and all the tadpoles looking very vigorous in it I decided it was worth trying to improve my frog population. The frogs in England are not the noisy sort.

Thinking of frogs, in summer time lake and river swimming can be a great way to beat anxiety and depression. You go in and come out a different person. Also, you see the world from the point of view of the water's surface. I remember being thrilled to see a kingfisher flying over my head, like an electric blue flash.

Also (before my Scleroderma developed) I used to have a quick cold shower every morning on getting up (my body only, not head). When the water touches the back of your neck it's like a light-bulb going on - zing!! It resets your system to a new, fresh place. I learned to tell myself that what I was experiencing was just a difference between sensations of warm and cold, and that I was perfectly safe amid those sensations - I was in control of the experience. I definitely felt better afterwards. I am told that doing the same ritual before going to sleep has the same effect, though I never tried it. Cold water in the morning washes away the psychological detritus of the night, and cold water before bedtime washes away the psychological detritus of the day. The ritual is a way to mark existential transitions between waking and sleeping. Perhaps this might help your insomnia. I don't do it any more because of the Raynaud's and I have become so thin I need to conserve body heat. However I remember once being strong enough to be able to go for a short swim in the North Sea on New Year's Day (2000).

Perhaps you could tell me about the woods and what you see there on your walks.

Tim

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Good mornig Tim. It's niceto read your posts. I lije the Wayn you say things. It sounds kind of poetic. Before Raynauds, I also used to enjoy short cold showers.I liked the rush of energy that came after. Right know, I'm loosing so much weight, So I also struggle to get conserve warm. River or pond swimming won't be a possible therapy for anxiety. I'll keep walking on the woods instead. To tell the truth, I walk without observing much because I'm self absorbed thinking about my diagnosis, sometimes in disbelief, sometimes in despair. As a way of coping, I come to this group, which became my emotional support. I think what I'm looking at this moment, when my physical ailments are not significant, is the reassurance that you can carry a meaningful life and not all is pain and suffering. Sorry Tim, I'm not only self absorbed but also very negative lately. I hope you're enjoying a nice warm day enjoying your outdoors with your tadpoles soon to be nice, non annoying frogs!

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Hello Tim, are you there? I'm sorry to abuse your patience, but I'm in a very dark place now. Need a friend that can understand what I'm feeling. You said you're feeling well. Tell me about the things that make your life enjoyable. Need an uplift, please!

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Hello Nereyda. I have been at work today. I am sorry to hear you are down. It sounds as though you are going through what is called 'the dark night of the soul'. You mentioned losing weight. How did you get on in the woods today? The woods of Illinois must be beautiful at this time of year. I imagine I hope tomorrow brings you more comfort and some sunshine and greenery.

Best wishes,

Tim

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Dear Tim, how nice of you to find time to reply as soon as you could. So you were at work today. Do you enjoy your job?. I haven't been on the woods because last night I took an anxiety pill and I've been dizzy all day long. Maybe later on I'll take a stroll in the neighborhood. I don't have your talent for describing things in a nice poetic way. I go to a path in the forest where people go to walk or ride their bikes. I've never been an outdoorsy person, and this is quite new to me. I'm following your advice, to get through the dark night of my soul as you very appropriately described it. How long is it going to last? I know you have issues of your own, and it's completely selfish to reach you for help. I apologize, and can't thank you enough for extending your hand. It must be late in England. I hope you have a restful night.

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Dear Nereyda, yes it is late (22.50). I have a dental appointment tomorrow morning that I am not looking forward to. I don't know that I can be of much help to you, but I hope you can somehow find a way to engage with the living world beyond your circle of distress.

I do find much joy in engaging with the natural world, as it is filled with variety and does not come with all the emotional hyper-activity that relationships, film, TV, radio, etc, so often bring with them. Nature plays a big part in my lifeworld philosophy, whether it be frogs, ants, flowers or fossils. At the end of the day we are all just passing through...

Tim

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Dear Tim, By now I imagine you're asleep. Hope you can rest, so your dental appointment won't be too unpleasant. Sure you've been so helpful to me. You're smart and wise, and love the way you say things.Your relationship with nature surely brings you joy and serenity. That's what your words transmit. I'll try to pay more attention to nature now that the hyperactivity of the world overwhelms me. You are right, at the end of the day we are all just passing through. Good night!

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Hi, I was diagnosed in January and I know exactly how you feel cause I felt the same, I have a 16 year old , I was making a will sorting out my affairs couldn't sleep was tearful and anxious...However I have calmed down and have accepted that its not a death sentence , its not the best thing to happen to me and I still have days when I am fearful then I have a relatively normal day and its light at the end of the tunnel... Take care my lovely it'll be not as bad as you think, I also read stuff on here and was scared, but everyone symptoms are different and there is plenty of great advise and support ..

Breath it'll be ok xx

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Good morning Caktar. Thank you for your message. It's a God's send! I'm pretty much in the same situation as you. Recently diagnosed and with a teenager to take care. My son is 17 and is in the autism spectrum. I need to be able to help him to get independent. I've been always the worrisome-panicky kind of person, and it doesn't help. During the day I try to do the next right thing and being busy helps to control anxiety. At night however, I can't sleep. It's so inspiring to read that you were able to calm down and some days you have a normal day. I hope I'll arrive there too. Caktar, I don't want to be intrusive but do you take antidepressants or something to help with the anxiety? I was planning to ask my gp . She put me in fluoxetine but my tongue became painfully dried and had to stop taking it. Hope you're feeling well today xx

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Hi Nereyda,

I was given tablets for anxiety but I decided to wait and only take them if I was in panic mode.. I still haven't taken them and don't think I will, I am already taking 10 tablets a day, god knows what its doing to my stomach so trying to take less tablets is the way to go.... I know the sleepless night are the worst when your brain won't switch off and the fear of whats to come takes over..

I am a single parent and was worried about what she would do, however we (you and I ) have a long life ahead of us and will be around for our children for many many years.

Contact me anytime...Get a goods nights sleep and rest assured things are not as bad as we fear.

Cathie x

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Thank you Caktar for your quick answer. I think I'm going to take your approach. Forget about antidepressants and use the anxiety ones as emergency after several sleepless nights. It's so reassuring to hear you say that things won't be as bad as we fear. Hope you're right, and we'll be able to take care of our kids. I wish you have a restful night sleep. Your nice words may help me to rest as well. X

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Good night my friend....Sleep is the best medicine....

Cathie x

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Hello Cathie. Nothing new here, just touching bases. Hope you're feeling well today.

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Good Morning Nere,

Have had more good days than bad days recently. Have actually been out to catch up dinner with friends and home at 12.45am, the downside of that is i'm completely knackered the next day but it was worth it in the long run...(I Think lol)

How are you feeling ? are things making a bit more sense ? Please feel free to drop me a line for a chat anytime its nice to hear from you....

Be positive

Cathie x

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Good morning Cathie,

How nice to hear from you! I'm glad to know you've been out with friends. As you said, even if you had to pay a toll for staying late it was well worth it. I admire your ability of carry on with your life despite the circumstances. It's the correct approach. I spend time reading what people post and everybody agrees that you have to adapt and keep living. I wish I could do the same, but the thought of the disease doesn't leave me a second. I'm sorry to be such a downer. I'm trying hard to change my attitude and hopefully I'll be able to accept and adapt to the circumstances. In the meantime, please ignore my negativity, and keep in touch.I appreciate your thoughtfulness and encouragement.

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Nere,

Please don't apologise for being negative, I completely understand , it is natural that you are preoccupied with the disease, its a big deal and there are days when I feel down and overwhelmed. Time is a great healer ...On a more positive note the weather here today has been fabulous have sat in the garden for a couple of hours reading the paper.... Sometimes I can even forget Crest...

I hope you've had a reasonably stress free day.

Take care baby steps is all that needed .

Love Cathie xx

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Dear Cathie,

How are you doing? I hope today you could enjoy the good weather. Thank you for being so patient with me. My mood doesn't improve much, so I went to the gp to ask for anxiety pills. She was kind of annoyed, and told me that I should be thankful and enjoy while I can. So true! Some people like yourself are living proof that one can ignore the Crest thing for a while and enjoy life. unfortunately it's different for me. The good part is that she prescribed a medicine and Yesterday I could finally sleep. Since I spend my sleepless nights reading posts, I read that you are in a gluten free diet. Is it difficult to follow? I was reading about the AIPand found it impossibly restrictive. Maybe gluten and dairy free I could go. Cathie, did you tell your kids about the disease? Sorry if I'm getting too personal. The fact is that I can communicate better with people in the forum because I feel they understand me. I haven't told my kids anything about. I don't know if I should ask a counselor or something for advice. What's your approach about it? Please when you'll have time drop me some lines. It's a pleasure to keep in touch with you. Xx

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Hi Nere,

I am doing good, I have now developed very dry eyes and a dry mouth but thats manageable. Sleep is essential as night times when you are alone with your thoughts is the worst time...so getting some sleep with the aid of medication is better than no sleep... How dare your GP be 'annoyed' it is her job to be compassionate it is we are living with the disease and empathy is all that is needed.. My GP said to me rather flippantly 'you've got Crest there's nothing you can do about it so just get on with it!' . I was really hurt by that and later when I had composed myself I rang the surgery and told the doctor directly that I didn't appreciate his flippant attitude , I felt better after telling him and he apologised ..

Yes I did tell my children, but made it light and positive , they need to know why you feel tired or aching or just a bit low and they are not stupid they notice things, my daughter is going through her GCSE's at the moment and is already stressed so I always make things more upbeat ...

Being on this site is a fantastic forum for information gathering, but it can also be a bit doom and gloom, not because the lovely people on here are wallowing , but because everyone has different symptoms and it frightens you into what may happen to you in the future....

Its not easy but just focus on the symptoms you are dealing with at this moment,.

Glutton free diet ? YUK YUK YUK , I have been to see my Thoracic consultant and now I am not allowed to eat , chocolate, butter, anything rich in fat ie cakes pastries biscuits, fizzy drinks, full cream milk, fruit smoothies, and caffeine, so due to all of these restrictions I have abandoned the Glutton free and now have multispeed bread, a little of what you fancy does you good is my new philosophy..

This reply looks a bit long ...sorry.

One day at a time my friend.

Take good care

Love Cathie xx

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Maybe your GP could give you anxiety meds? I was diagnosed 7 yr ago with the systemic kind but am relatively stable. I am in Calgary Canada so also do not understand the UK system. Here I was told by my first rhumy no treatment no cure. I fired her. My new one has prescrbed adalat and pentoxfylline for the reynauds. Worked til this winter, more ulcers, so I'm on viagra as well. There are heated clothing on line. Rechargeable batteries. The vest and gloves are wonderful. Always have mittens (frozen food section) and coat (air conditioning). Went on a cruise and they kept it so cold I could not be indoors!

Learned not to eat or drink anything cold. That causes the blood to warm your organs and your fingers go numb.

Treat yourself with kindness.

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Hello Roxanne,

How nice of you to send me this message. It's very comforting to know that seven years after your diagnosis you feel relatively stable. It seems to me that your main issue has been Raynauds. Mine is still tolerable, but my anxiety isn't. Gp prescribed me anxiety pills, but I was reluctant to take them because I didn't want to become dependent. However, it's been a month since my diagnosis and I'm still in shock. I'm going to start taking them because I can't carry on with life if I'm constantly thinking about scleroderma.

Roxanne, I'm sorry to be intrusive, but this is a question that is in my head constantly. How do you cope with the disease? For what you say about going in a cruise, I think you're able to enjoy life despite sclero. Can you tell me about it? Since my diagnosis this is a constant thought, a constant question that I make to the people in the forum that generously have given me advice and support. Thank you for your advice regarding Raynauds. Sorry to hear that they kept the boat so cold, you had to stay outside. About the heated clothing, do you have a preferred site? From now on, I'll make sure not to eat or drink anything cold. Roxanne, thank you again and I hope you're doing well today. The weather in Canada must be as nice as in here, so I hope you're enjoying the nice weather. Take care!

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Fortunately is nicer every day now. When I was first diagnosed I crashed for nearly 3 years. I had no support from family or co-workers. The first doctors attitude made me feel like my life was over. The worst part for me is the fecal incontinence. 1/3 of us get this. Go out and then go oh I stink or feel wet. No warning and nerve damage prevented any sensation. When I found out I have liver disease the meds help that problem. Not gone but manageable. The reynauds is more annoying than anything

. Once I learned what to do it not a problem unless I am careless. The way it was explained to me is our bodies over-react to any change in temp. We can live without fingers and toes so the blood rushes to warm our core organs and hands turn blue etc. Doctors always talk about mittens. But keeping your core warm is the key. With the vest my chest is warm so my hands don't get as cold. Walking my dogs I take a light jacket in case a breeze comes up.

I will on occasion have cold food or drink but try to warm the core first. Hot shower after ice cream helps. I bought my vest from warma wear in the UK 5 years ago. It is a little bulky but love it. The gloves on line were more like those bulky ski gloves. 2 years ago I found thin ones here in Calgary. From Power In Motion. They are on line and have legging, vests, hats...very expensive. The gloves were $250.00. But I can do things with them on and they don't fill up my purse. The other companies may have caught up to this technology. My vest was $100.00. I have boots also from Marks Work Warehouse but I don't like them. Like wearing ski boots but to shovel the driveway OK. For walking get the heated socks.

My rhumy saw my gloves for the first time a few weeks ago. He asked if I claimed them as a medical expense. Never thought of it but worth you checking into that.

After 3 years of staying home alone, stopped messing my pants constantly, I acccidently found a new band I liked. First thing that interested me in years. It was their cruise I went on (scary) and met wonderful ladies to hang with. I had way too much fun. Taught me to do what I can while I can and ignore my disease. That was 4 years 4 cruises and a eco lodge trip ago. So there are things that are and will get harder but I decided to have fun making memories instead. Depression and isolation didnt work. Buddhism helped also. As you said not knowing what to expect or having hints is the hardest part. This forum has so many people to help, listen, and prove that we still enjoy life. Sometimes things that seem bad end up to be blessings. I am so glad this disease gave me the opportunity to enjoy life.

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Ps keep in touch

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Dear Roxanne,

I can't even express you how thankful I'm for your letter. It's so warm and candid that I've read it already several times. Now I understand you a little better. When you said , I'm stable what you ment was that the disease has slowed down, but the ravages that has left, you have to live with. You said that you crashed for nearly 3 years after the diagnosis. Does it mean that you were physically and emotionally devastated? Three long years of sickness and isolation were a brutal journey that only courageous people like yourself could overcome. I'm in awe with your resilience, Roxanne! I'll keep in touch.xx

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