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Susiebuilder

Hard to Move!

7 posts in this topic

My 18 yr. old son was diagnosed with limited systemic scleroderma two years ago and has remained very active. In fact, he has an athletic scholarship offer for college. However, as a senior, he has been late to school almost every day, sleeps a lot, and isn't anxious to train as much as he needs to.

 

Yesterday, he told me that some mornings he just can't move very well and is in pain. He says it isn't really muscle pain, but just pain, and it is hard for him to get up and get moving.

 

He is on 12.5 mg methotrexate injections each week and takes folic acid and vitamins. He has raynaud's, but doesn't take medication for it.

 

Is this common for those of you with limited ssc?

 

Susiebuilder

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I think it's definitely something he should mention to the doctors.

 

But the fatigue he's experiencing, I think is pretty common. At least for me. I'm close to your son's age and some days, it's a chore to just get out of bed. One of the biggest things that has helped me get through college, etc, is to just know your limits and not push it too hard.

 

If I push for too hard, too long, I just crash and it's extremely difficult to recover after.

 

good luck!

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Hi, Susiebuilder

 

Part of the inflammatory arthritis I suffer is what is referred to as 'morning stiffness' but involves more than just stiffness, for as long as an hour each am. It may be that there is an inflammatory element to your son's illness as well. I also think it is worth mentioning to the doctor.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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After dealing with this disease and it's secondary effects for 31 years, my greatest recommendation is that you be sure that you are seeing a scleroderma expert - preferably associated with a major medical institution. It's amazing how little most doctors (sometimes rheumatologist!) know about this disease. You may be able to find out a great deal about medication options. Methotrexate sounds like a fairly strong drug for limited sclero, but I am no doctor and every case is different. You will want to be very wary about steroids, which can do wonders for inflammation, but can have dreadful side effects.

 

There is a common, inexpensive blood test for inflammation called the Erythrocyte Sedimentation Rate (ESR or Sed Rate). Unfortunately it is non-specific (indicates inflammation from any source - flu, arthritis, cancer). This test can be very useful to determine if inflammation is going on - and inflammation can definitely leave you with pain and fatigue. The higher the numbers above normal, the worse you feel. I've experienced exactly the sort of issues your son has complained of.

 

I've become so accustomed that I can make a very good guess of my sed rate based on how I feel!

 

Good Luck,

 

Craig

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<<He is on 12.5 mg methotrexate injections each week and takes folic acid and vitamins. >>

 

Hi Susie ,

 

You brought back some sorrowful memories of Gareth's senior year. It was all he could do to drag himself to school each day. He was diagnosed that Oct of his senior yr. Gareth got relief from Plaquenil last June. One thing I want to stress is autoimmune depression. We just discussed this with G's psych doctor......the same antibodies that attack the body cause the Seratonin levels to drop and depression can happen. Please keep that in the back of your mind should his 'love' of sports drop off completely.

 

Take care, Everyone.

Margaret

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Hiya Susiebuilder,

 

I'm 18, and I've had sclero since 1996. I've experienced pain on my shoulder blades, which isn't really muscular pain, but still really unpleasant and disturbing. But in my case, I don't really feel it when I'm exercising, or at least it gets a bit better anyway.

 

Emmi

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