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Frustrated by this disease


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#1 purplelibrarian

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Posted 10 March 2009 - 05:42 AM

I'm 35, female and am new to the forum and was diagnosed with limited scleroderma last year. I can't walk without pain anymore. If I sit for a long time, it is hard for me to get up. My knees hurt. I can't open a jar or anything anymore.
I have Raynaud's.

Sometimes I have pains throughout my body and don't know if it is scleroderma.

The rheumatologist is not helpful. She says physical therapy or acupuncture won't help.

I have exercises to do that the chiropractor gave me. I'm just lazy and I hate exercise.

I don't want to take medication unless I have to.

Another doctor I go to has helped me with my diet. She is trying to get my adrenals under control.

I'm just sick and tired of being in pain. I'm just complaining. Thanks for listening.

#2 jefa

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Posted 10 March 2009 - 06:22 AM

Hi, purplelibrarian, and welcome to the ISN Sclero Forums. I am glad you found us but sorry you are having a bad day. We all need to complain now and then. It is all very frustrating at times. I am not a doctor of course, but it would be nice if your rheumatologist had a bit broader view of the efficacy of various complemetary therapies. Unfortunately, many specialists have a rather narrow perspective.

I hope you will find some interesting information on our Scleroderma Alternative Therapies page. I have found it very helpful.
Warm wishes,
Jefa

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#3 Wohali

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Posted 10 March 2009 - 07:14 AM

Hi Purplelibrarian,

Don't worry any time you need someone to listen just come here. I think that's why we are all here. I'm 39 and have been diagnosed with CREST as my doctors still prefer to call it since I was around 34. But I think I've had it longer because an x-ray taken after a car wreck in my 20's showed my entire hip area calcified. Which the doctor just remarked as "well that's odd".

I hurt all over too. I always blamed it on other things because I've had Lyme disease, plus x-rays show osteoarthritis in my knees and toes. But just about every joint hurts and muscles hurt and now the newest complaint is this weird burning sensation in my feet and lower legs. The rheumatologist I saw was equally unhelpful. He said CREST would eventually kill me and there's nothing he could do for me. He even refused to treat the pain which is in my opinion cruel. I was surprised though when the cardiologist told me "its no wonder you hurt all over because CREST attacks collagen in your joints" and he said "I bet your fingers hurt a lot don't they?" Wow someone who understands. :) He told me when he was in school he debated for a long time whether to become a rheumatologist or a cardiologist is how he knows so much about the illness.

#4 purplelibrarian

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Posted 10 March 2009 - 07:32 AM

Thanks for the link to the website. I am doing alternative therapies. I found fish oil has helped with my pain. When I stopped taking it, I was in a lot more pain.

I am getting diagnosed by conventional doctors and being treated with alternative medicine. That's my plan, so far.

I was tested for heavy metals and took suppositories to remove the metals. It seemed to help get rid of the metals.

I feel I am given more attention when I go to an alternative doctor than the traditional doctors.

I don't like doctors just writing a prescription and telling me to be on my way. I sometimes feel doctors work for the pharmaceutical companies and not the patient.

#5 Jeannie McClelland

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Posted 10 March 2009 - 07:46 AM

Hi Purplelibrarian,

Welcome to the Forum. Any time you feel the need, this is the place to come and vent. Since we're a collective, our shoulders are broad and comfortable to cry on. You'll never find a more understanding group of people either. We know what you are going through.

I agree with everything Jefa said and the link to alternative therapies will guide you to a lot of helpful information.

I'd add from my own experience that it is incredibly important to find a specialist willing to 'partner' with you in your care. I'm incredibly fortunate in having a great team of specialists working from a center of excellence that believes in an holistic approach. When I was diagnosed, they immediately made appointments with a physiotherapist (to address my stiffness and joint/muscle pain); an occupational therapist (to help me find new ways of doing difficult tasks in order to conserve my limited energy); a dietician (to help me plan a diet that would address the problems associated with scleroderma GI issues, prednisone side effects, etc.); a speech therapist (swallowing); and offered me the chance to have counseling if I developed depression. That long list isn't just to brag about my doctors, it's also to make a few suggestions for consults you might find helpful. :)

In the meantime, I'd suggest also visiting the page on Coping with Scleroderma. There are a lot of great articles, including one on Doctor/Patient Communication. I think I'd sub-title that one "Getting the Best Out of Your Doctor." :lol:

Best wishes and warm hugs,
Jeannie McClelland
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#6 ashu

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Posted 12 March 2009 - 02:13 AM

Hello welcome to our forum,

Physical therapy is of the utmost importance. If you neglect at this stage you are putting yourself into trouble .How much ever is possible you do it. You shouldn't go to the doctor for advice and then say you hate medicines. If your doctor says you should take medicine, give it a chance. My daughter who is 12 years old is suffering from scleroderma with dermatomyositis. I neglected physical therapy and she is now partially crippled. My advice is to see a rheumatologist and take his advice. If you are still frustrated go through the stories in this forum. They are very heart breaking. Best of luck.

M/O ASHU
DR. DAMAYANTI

#7 purplelibrarian

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Posted 12 March 2009 - 03:42 AM

Ashu,

Doctors can be wrong. It's my body. You say physical therapy is important. Well, my rheumatologist said it wouldn't be of use. I know she is wrong, but I need her referral to get physical therapy.

I go to the doctor to see what is wrong. I want a diagnosis. The treatment is my decision. I am going with alternative therapies at the moment. I have had experiences of side effects and the doctors say it's a coincidence or it wasn't supposed to happen. Gee that really helped, doctor.

I am going to my primary care physician today because my ankle is swollen and it hurts for no reason. I will ask him for a referral for physical therapy. We'll see what happens.

I know there are people who have it worse than me right now, but that's what scares me because that may be me down the road.

#8 jefa

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Posted 12 March 2009 - 03:56 AM

Hi, m/o Ashu and purplelibrarian.

You both have good points to make, but ultimately, as purplelibrarian, says, what happens to your body is a personal decision. We can't always be sure that the information we are getting is accurate for our circumstances, nor can we expect anyone else (including the doctor) to know all the mitigating factors. The best we can do is to stay informed and make sure you are heard. And of course, you will keep looking until you find someone who will listen, but even they might not have all the answers. Good luck with your ankle, purplelibrarian.

And Dr Damayanti you have no way of knowing for sure whether the lack of physical therapy is what caused the crippling. Sometimes the progression is strong as in the case of your daughter and we can only try fight it as best we can. As a parent, though, it is hard not to have some guilt about the part we may have played.
Warm wishes,
Jefa

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#9 debonair susie

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Posted 12 March 2009 - 09:26 AM

Hi purplelibrarian,

I would like to also welcome you to the forum where we all have a particular kinship.

There are so many great folks here who are of such great support to one another.

As jefa intimated, we are all different with our health issues, yet our empathy cannot be surpassed!

I hope you get answers to your questions.
Special Hugs,

Susie Kraft
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#10 purplelibrarian

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Posted 13 March 2009 - 03:44 AM

Just an update. My primary doctor said I just had an ankle sprain. He would not refer me for physical therapy because he said the rheumatologist knew best.

He has an excellent bedside manner but I always get the feeling he has no idea of what he is doing.

I want to get a second opinion from the rheumatologist.