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#1 winnie97

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Posted 17 October 2010 - 03:41 AM

Hi,
I was diagnosed with limited systemic sclerosis in December 2009. I also have fibromyalgia, underactive thyroid, Raynaud's, Sjogren's, IBS and am on steroids, methotrexate and another 12 other different medications. I've been on methotrexate since March of this year and have been fine on it. It does makes me very tired so as I work I have to take it on a Saturday before I go to bed.

I have recently noticed that my balance isn't as good as it was and if standing I will suddenly stagger left or right; it's very unnerving.

Also I have started to get pain in my jaw where the jaw bone muscle joins the skull and opening my mouth wide enough to get normal food in is a problem. I can't eat food that is hot (temperature hot, not flavour hot) as it burns all the way down, so at the moment I am eating mushed or very small pieces of lukewarm food, yuk. My general practitioner won't do anything with me and if I go about any new symptom all I get is "tell the rheumatologist on your next visit", so now I just don't bother going to the doctors anymore.

Does anyone else have balance problems? I also have very poor concentration, and forget what I'm talking about halfway through a sentence. I always feel like I've got a fuzzy head. I've recently reduced my hours at work as full time was just too much. I also get what I call my unplugging episodes, I can feel okay, then within a matter of minutes my energy levels go through the floor and I have to go to bed as I cannot stay awake. I can sleep for 15 hours sometimes, does anyone else experience anything like this?

Diana

#2 CraigR

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Posted 17 October 2010 - 03:51 AM

Are you seeing a scleroderma expert? I'm not a doctor, but I would worry that your great number of medications could be contributing to your problem, and a second opinion might be helpful.

Good luck,

Craig

#3 Jeannie McClelland

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Posted 17 October 2010 - 04:40 AM

Hi Diana,

I'm with Craig. A second opinion is warranted and at the absolute very least a medication review is called for.

I just did a count of my current medication list and came up with 12 plus 2 others (one is Reclast given annually for osteoporesis) and the other is "when needed" and I seldom take. Several on my list have "may cause dizziness" on the label and jaw pain is a symptom of a known, but thankfully rare because it is potentially very serious, side effect of some osteoporosis medications.
I'm fortunate in that I have a pharmacist who is really involved in what I take. Well, she's my daughter and ought to be!:lol: All joking aside, you could call your pharmacist and ask if you could come in and have a review of what you take. You should take a current list with you, especially if not all your medications come from the same place, and ask for a list of side effects, interactions, and if any specific medication could cause your symptoms.

Now, I'm sure many of us have some balance problems from time to time and also your other problems, but taken all together, I'd be off to the doctor, myself.

Best wishes,
Jeannie McClelland
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#4 Amanda Thorpe

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Posted 17 October 2010 - 05:05 AM

Hello Diana

Firstly it's unacceptable if your general practitioner is dismissing any issues you present with and just referring you to your rheumatologist. Although we can't expect our general practitioner's to be scleroderma experts we can't store up every new symptom until we see the rheumatologist which may only be every 6 months. It may well be that your general practitioner doesn't feel confident enough about his knowledge of scleroderma to get involved in your treatment. Talking to your general practitioner about your concerns may be the place to start addressing the issue. The National Health Service (HNS) website, www.nhs.uk, says:

Making a complaint about your general practitioner:

As a first step, you could talk to:

•your general practitioner, or
•the practice manager at your general practitioner surgery.
In many cases, the problem can be solved straightaway, and you won’t need to take your complaint any further.

Getting help and advice
If you don't feel comfortable about talking to your general practitioner or practice manager, you may want to seek advice.

All NHS trusts and Primary Care Trusts (PCTs) have a complaints manager who can advise you about making a complaint. Your general practitioner surgery should also have someone who oversees complaints.

If you’re not sure who to contact, or you want advice about how to complain, you can contact your local PCT. You can get their contact information from our find services directory or by looking in the phone book.

You can also get advice about your complaint from:

•your local Patient Advisory Liaison Service (PALS), or
•your local Independent Complaints and Advocacy Service (ICAS).


Have a look at the website for more information. You need to decide whether you want to deal with the issue or continue as you are which isn't necessarily in your best interests.

As Craig mentioned there are scleroderma experts you might want to consider being referred to if you're not happy with your current rheumatologist. This link I have given you includes all specialties so you'd want to just pick out the rheumatologists. The Royal Free in London is a centre of excellence for scleroderma and they provide rheumatology specialist nurses that you can telephone for advice between visits.

When we're ill the last thing we want to deal with are issue with doctors but sometimes we have to.

Take care.
Amanda Thorpe
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#5 debonair susie

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Posted 17 October 2010 - 06:01 AM

Hi Diana,

I am so so glad you have become a member here and I would like to take this opportunity to welcome you.

I'm in complete agreement with Craig, Jeannie and Amanda. as wonderful as medications can be, some possess side effects that can (so metimes) be worse than the symptoms of what they are supposed to be helping :emoticon-bang-head:

It is an excellent idea for the doctor/patient to initiate medication reviews, especially when another is being added.

I am (currently) taking 5 medications, with regularity and one is new (to see how I do with it), but feel it will become permanent, when I see my rheumatologist...in November. This new one actually replaces the Mobic (so far), treating my pain, helping with my energy level (because I have less pain) and also has done a remarkable job of keeping my Psoriasis at bay.

In my case, the fewer medications I can take, the better I like it.

Several years ago, my rheumatologist visited with me about adding 5 medications to my list, but after asking her what they were to be for, I chose not to add them. My reason for choosing as I did: I am on a maintenance regimen with my medications and let her know that I felt I was doing fine with what I was taking. My personal feeling is that should I need to add at a later time, I have that option.

I hope that you and your doctor can determine what is causing your symptoms.

I do want to add that fibromyalgia can cause the fuzziness you spoke of in your first post. I also suffer from the same thing...when talking and forget right in the middle where I wanted to go with what I was talking about! As frustrating as it is, it happens to us.

It's good that you were able to cut back on your hours at work. I don't know how you were able to keep the pace you have kept!

As for the sleeping, for the first 4 years, or so, I also was sleeping a lot. Today, I NEED 10 hours sleep at night. If I sleep LESS, I'm worthless for the day.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Amanda Thorpe

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Posted 17 October 2010 - 06:15 AM

Hello Diana

I forgot to mention, my sleep record is 19 out of 24 hours...beat that.

Take care.
Amanda Thorpe
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#7 Lynnie

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Posted 17 October 2010 - 10:27 AM

Hi Diana,

I like you was diagnosed June 2009 with CREST/limited scleroderma. I have the usual culprits: :D Raynaud's, painful stiff joints. I am on immune suppression therapy and a few others medications!

I too agree with everyone that a review of the medications you're on is warranted and if your general practitioner can't help you either complain to the appropriate official or change your doctor to one who can take an interest in you and your therapy. Whether or not he's up on scleroderma and its treatment he certainly will know about drug interactions and what goes with what!

Strange you should mention a fuzzy/dizzy head. The last few days I've been like that! Whereas your jaw is your problem, my issue is my right elbow. When I saw my rheumatologist in September, I got a hefty dose of steroid injected into my rear. It's helped a lot with the discomfort.

As joints flare/inflame we can get tendon/muscle rub and nerve pain. The jaw is a hinge joint just like the elbow, knee, ankle. Perhaps your jaw is your weak spot.
You take steps to get it sorted out, okay? Don't suffer if you don't need to. :)

Hugs,

Lynn

#8 debonair susie

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Posted 17 October 2010 - 03:00 PM

WOW, Amanda...You rule!
Special Hugs,

Susie Kraft
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#9 winnie97

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Posted 17 October 2010 - 11:09 PM

Hi,

Thanks for all the replies.

I agree my general practitioner doesn't know much about systemic sclerosis and has told me that. Mind you the consultant at the hospital I'm at at doesn't know much either?

How could I find out if there is a specialist in my area and then how would I get to see them?

Strangely enough my pharmacist put a note in with my last carry bag load of medication about a medication review.

Today I am feeling really bad, balance not good, no energy and generally feel yuk. I've dragged myself into work but wish I hadn't.

diana

#10 Jeannie McClelland

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Posted 18 October 2010 - 02:37 AM

Hi Diana,

I hope today gets better for you. Maybe the distraction of work will help? OK, first joke of the morning and not a good one.

For help in finding a scleroderma expert in England, go here. I know several of our UK members go to Leeds to see someone. Here are the details of the one I know about for sure:

Institution: Leeds University, Academic Unit of Musculoskeletal Disease
Department of Rheumatology
Leeds General Infirmary
Great George Street
Leeds, West Yorkshire LS1 3EX
England

Coordinating Investigator: Professor Paul Emery, BA, MA, MBChir, MRCP, MD, FRCP

Other Local Participants: Cheryl Fernandes, MBChB, MRCP
Naomi Reay, RGN, RSCN, BSc

Fax Number: 44 113 39 22896


I hope this helps a bit. It's maybe a step forward and that's always a good thing.
Jeannie McClelland
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#11 Dorothy

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Posted 18 October 2010 - 03:49 AM

Hi there- I agree with all the advice above.

And want to add my experience. 

I have days when I feel a tilt in my walk. Or instability when turning to the side. I associate it with the muscle/myositis weakness I have. It always surprises me on my bad days. And is hardly there on my good days. It's all muscle - no lightheadedness for me.

I bring it up to my rheumatologist when I start to feel the need to use a cane - or if other muscle issues persist. Especially problems swallowing. But by then, something usually shows up wrong in my blood work, too.

Also - one of my early problems with scleroderma involved pain along the nerve going down my jaw to my teeth. Acetametaphen barely helped. Wonder what your rheumatologist recommends.... 

Hope you get the answers from your doctors! Please - don't get discouraged.    

#12 Shelley Ensz

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Posted 18 October 2010 - 04:41 AM

Hi Winnie,

I'm sorry you are having such problems and hope that you find their cause soon. I have had similar symptoms which are caused by autoimmune ear disease and mine is also complicated by orthostatic intolerance, on top of it all.

You could consider the idea of going to your primary care doctor, and since they are likely to beg off by claiming not to know anything about anything anyway, ask them for a referral to an ENT (ear nose throat) specialist. You could read up on things like Meniere's first, to see if it fits with your own experience or not. Then you could at least get ear problems ruled in or out as a possible cause of your symptoms, in addition to checking your meds, of course.

It might also be something as simple as an ear infection, or entirely different issues for that matter. But you need to begin by getting the ball rolling in some direction because altogether it will probably be too much for your rheumatologist to address in a single visit, and besides, there is no sense waiting when this might easily fall in the realm of another specialist.

For a primary care doctor, what you would want is a top notch internist (internal medicine specialist). They should be able to handle treatment for well over 90% of whatever symptoms you might have and be more than capable of managing your care in between usually far-flung rheumatology appointments. They are a step above a normal family doctor in specialized training. The exact terms might be different in your country, however the general idea should be the same, in that you need an upgraded version of a primary care physician when dealing with most complex or rare chronic illnesses.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#13 Amanda Thorpe

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Posted 20 October 2010 - 06:46 AM

I never knew there was an internist available in between the primary care doctor and the specialist, what an excellent system! Unfortunately here in the UK we don't have the equivalent of an internist, we have our general practitioners (GP's) and consultants. What our general practitioner's are unable to deal with they refer to consultants, like rheumatologists, to deal with.

Take care.
Amanda Thorpe
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#14 Shelley Ensz

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Posted 20 October 2010 - 09:54 AM

Hi Amanda,

Thank you for looking into the topic of internists. I had no idea the U.K. didn't offer that specialty. I learn new things every day around here!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.