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Stress, depression and anxiety!


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#1 xxx

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Posted 21 June 2015 - 11:56 PM

Hello everyone!  

 

I got diagnosed with scleroderma approx 10 months ago to much surprise!  I am struggling so much with anxiety and depression.  I am finding it really hard to cope with everyday modern issues.  For example:-  dealing with driving my car, the stress my husband and daughter have with their jobs, everybody's unhappiness, the rat race of everyday living etc. etc. etc!  My question is:- is this all part and parcel of the condition???

 

I have always been the 'rock' in all issues but i just cannot seem to cope with things anymore!

 

Any advice would be greatly appreciated and thank you for listening to my rant!



#2 Joelf

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Posted 22 June 2015 - 05:12 AM

Hi Mothergoose,

 

Welcome to these forums!!

 

I'm sorry to hear that you've recently been diagnosed with Scleroderma and I'm afraid that anxiety and depression can be part and parcel of it, not least because it can be a shock to be diagnosed with such a bizarre illness and also the worry of how it will affect your quality of life can be a constant strain. I don't know how old you are, but if like me, you're not in the first flush of youth, then I think that things do become more difficult and less easy to deal with as we get older and having Scleroderma doesn't help.

 

You haven't mentioned how you're affected by Scleroderma, but we do have extensive medical pages covering every aspect of this disease and also other autoimmune diseases. Unfortunately, stress and worry are the very worst things for autoimmune problems and can exacerbate the symptoms, so it is important to try and learn to control the stress and worry you're experiencing. (Easy to say, I know! :wink:) The good news is that you've found our forums and joined our community, so immediately you're among people who do understand the problems you're facing.

 

We do recommend that our members consult a Scleroderma expert, as this complex disease requires specialist knowledge and expertise. I'm a patient of The Royal Free Hospital and whilst like most of the NHS their admin leaves a fair amount to be desired, they are very knowledgeable regarding Scleroderma, so it would be worth your having a referral to them if possible.

 

Please do continue to post and raise any queries you may have and we'll do our best to help you.

 

Kind regards,


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#3 xxx

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Posted 22 June 2015 - 07:47 PM

Hello Joelf

 

Thank you for responding so soon.  I am 57 years old.  I have been attending the GP for many years with joint pain and for lumps and bumps on my hands and was treated with ibuprofen.  I ended up in A & E when my right arm suddenly stopped working and was sent to a rheumatology dept.  A young and wonderful doctor immediately diagnosed scleroderma!  My medication is:- 400mg hydroxychloroquine per day and 300mg gabapentin per day and any paracetamol or ibuprofen that I may need.  I was offered steroid injections for my shoulders but I declined these!

 

My diagnosis at the moment is:- Limited scleroderma (ANA and anti-centromere antibody positive).  I believe this isn't a severe form of scleroderma and it certainly isn't as severe as some of the issues that I have been reading about on this forum. I will endeavour to document the way which it affects me:-

Severe shoulder pain and limited movement.

Mouth ulcers

Oesophageal dysmotility

Extreme fatigue and tiredness

Raynaud's

Abnormal nail fold capillaries

Mild telangiectasia of face

Dry patches on skin

Depression and anxiety (severe)

 

I have had routine baseline echocardiogram and pulmonary function tests which are both within normal limits.  I didn't realise how a complex condition this was!  I have always been fit and healthy, my family and friends say I am really young looking (40ish) and I certainly don't act like a 57 year old!

 

I hope all this makes sense to you and thank you for listening!  I will certainly look into getting an appointment at The Royal Free Hospital but in the meantime if anyone can offer any advice and share their experiences I would be truly grateful.

 

Thank you



#4 Joelf

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Posted 23 June 2015 - 09:59 AM

Hi Mothergoose,

 

I have Limited Scleroderma and experienced a lot of the same symptoms as you describe, especially the Raynaud's and joint pain. Thankfully, I don't suffer with the gut problems, but unfortunately, my lungs are involved, although in a way that was a blessing, as I had some concrete symptoms for my doctors to work on and I was referred to The Royal Brompton Hospital to have my lungs treated and thereafter referred to The Royal Free. The Brompton were excellent and because they had dealt with Scleroderma induced non specific interstitial pneumonia before, they were used to the warning signs and were able to treat me successfully, for which I'm eternally grateful. Although I was suffering with the joint problems, Raynaud's etc. for possibly eighteen months or so, it wasn't until my lung problems manifested themselves that I was diagnosed. However, I consider that to be quite lucky, as many of our members struggle to obtain a diagnosis for years, before they are told about Scleroderma; this is because the disease does affect everyone differently and has so many little idiosyncrasies.

 

I'm glad to hear that you're having routine baseline echocardiogram and pulmonary function tests; it is important that you're monitored on a regular basis, so that any change or deterioration can be dealt with. I have to say that I am very fortunate, as unlike some of our members, my quality of life is still very good and although I used to be very fit, I can still be quite active.  Unfortunately the prednisolone I take for my lungs has messed up my hip joints, necessitating hip replacements (one down, one to go!) which did curtail my activity somewhat! But I've found that it's surprising how quickly I can get back to doing most of my usual activities again.

 

Kind regards,


Jo Frowde
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#5 Amanda Thorpe

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Posted 26 June 2015 - 12:59 AM

Hello Mothergoose

 

Sorry for delayed welcome, you're in the best place to get the support and information you need and want from the very people best placed to give it...those of us with scleroderma...our family...our friends.

 

Firstly, may I suggest that you restrict your concerns to "your unhappiness" rather than "everyone's", especially as the "everyone's" are adults capable of managing their own "stuff". With all that scleroderma has already brought you, may well in the future, you have enough "stuff" of your own without picking up other people's. Emotional adjustment  in scleroderma, because of scleroderma, from scleroderma, with scleroderma, however you phrase it, you are already going to have to manage your own emotions so leave others to manage theirs. I insist on it!

 

I totally encourage you to get a referral to the Royal Free, one thing you don't want or need is hassle with your medical team and having your care under a team of scleroderma expert is one way to make sure you don't.

 

I see that you take Ibuprofen, a nonsteroidal anti-inflammatory drug (NSAID)  however, for people with a chronic illness, NSAID's are not always a good idea long term. I don't know if you have reflux, if so then Ibuprofen will aggravate this symptom.

 

I note that your diagnosis is limited scleroderma and you're quite right in that it's slower in onset, progression and outcome but it is still a type of systemic scleroderma so nothing to be taken lightly. Of course, as Jo has already said, and as I, with diffuse, say, you can still live a perfectly wonderful (albeit different beyond all comprehension) life with scleroderma. Please post your questions/frustrations as they arise and remember that we're all in this together!

 

Take care and keep posting.


Amanda Thorpe
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#6 xxx

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Posted 01 July 2015 - 02:11 AM

Hi everyone!

 

Thank you all so much for responding, I now know that there is always someone 'out there' that understands what I am going through and I can always  get an answer to any concerns and questions that I may have!

 

I have a consultation with my GP and rheumatoid consultant in a couple of months time so I will ask them if I can get a referral to the Royal Free.  In the meantime I will ask your advice on any concerns I many have.  

 

Many thanks and take care!



#7 Amanda Thorpe

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Posted 01 July 2015 - 09:19 AM

Hello Mothergoose

 

Excellent! As far as I am aware there is no good reason why either could refuse to refer you. You have scleroderma and the Royal Free houses scleroderma experts so your request is based on clinical grounds so and I don't see how anyone could refuse and on why.

 

Take care and keep posting.


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#8 xxx

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Posted 31 July 2015 - 10:14 PM

Hello

 

Good news!

 

My GP has been very helpful.  After telling her I wasn't too happy with the treatment I was receiving for my Scleroderma at the local hospital she referred me to The Royal Free!  An appointment has been made for me in mid September!  WOW!  I wasn't expecting something so quick!  Very impressed!

 

I will keep you informed!

 

Regards



#9 Joelf

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Posted 01 August 2015 - 01:50 AM

Hi Motherhood,

That is a result!! :yes:

Good for you and your GP; it just proves that persistence pays off with the NHS.

I do hope that your appointment will go well; please let us know how you get on.

Kind regards,

Jo Frowde
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#10 Amanda Thorpe

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Posted 01 August 2015 - 03:07 AM

Hello Mothergoose

 

That's great news! When you go to the Royal Free scleroderma is NOT housed within the rheumatology clinic, as per usual but is housed within the Immunology clinic. It's a relatively new clinic and has phlebotomy on site, it's a lovely light and spacious reception area with a TV and coffee vending machine. All the mod cons!

 

Do let us know how it goes and take care.


Amanda Thorpe
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#11 xxx

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Posted 22 September 2015 - 12:50 AM

Hi everyone!

 

I hope you are all doing good!

 

I have now had my appointment with The Royal Free.  It was a really good appointment which was thorough and lasted 3 hours (whereas at my local hospital it would have been 15 minutes).  They have confirmed that I have Limited Scleroderma and treated and counselled me for the condition!  I had numerous tests and also signed up for their Research Programme.  Its now a monitoring exercise and I will be treated for any symptom that may arise by my local GP - unless symptoms get unusually severe - and I will go back to The Royal Free!

 

I will keep you informed of my condition!

 

Take care



#12 Joelf

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Posted 22 September 2015 - 05:15 AM

Hi Mothergoose,

 

I'm so pleased to hear that you had a good appointment at The Royal Free; it's quite a comfort to have a consultant in whom you can have confidence. That can be a relief and can reduce your anxiety, which in turn helps you to cope with the disease.

 

Now that you're in the loop, it's much easier to get the treatment you need. Please do keep us updated.

 

Kind regards,


Jo Frowde
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#13 Amanda Thorpe

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Posted 22 September 2015 - 10:15 AM

Excellent Mothergoose! Makes a real difference being seen for 3 hours rather than 15!

Glad it all went well for you and you have the reassurance of knowing that should anything change you can always go back to the Free. Meanwhile, here we all are!

Take care.
Amanda Thorpe
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#14 Shelley Ensz

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Posted 24 September 2015 - 05:29 PM

Hi Mothergoose,

 

Oh what fabulous good news it is that you got in to the Royal Free scleroderma clinic, and that your diagnosis is confirmed and you had such a thorough appointment.  I'm very happy for you!!

 

Isn't it amazing the difference that proper care can make?

 

:hug-group:


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