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Knowles

New member
Joined
Sep 12, 2016
Messages
8
Reason
DX FIBRO
Diagnosis
02/2014
Country
US
State
WI
I have read so many threads and can relate to so much. It is apparent that we all have so much in common yet our experiences can be so personal. It is great to have such a forum, if not to seek out help but to know that we are not alone in our daily struggles. I wish everyone could have a rheumatologist like I have. I live in constant pain, like so may of you. You can't just will it away. And fibro can be the source of so many other miseries that we have to cope with. My rheumatologist is always urging me to get more exercise. Specifically, cardio exercise. During my examination she tested me for flexibility in all aspects and I have barely any. I also have ankylosing spondylitis, not a good thing. I am on medication which includes methylphenidate (Ritalin) to help with the dreaded fatigue that many if not all of us deal with every day. The constant firing of pain signals from our body is a constant drag on our brain. I hate taking this drug but it gets me through the day. Before taking it I couldn't drive 20 miles without having to pull over to the side of the road because of the terrible fatigue. I also take an anti-depressant. I'm not sure if it is for depression or if it helps regulate the chemicals in my brain that are constantly out of whack. I once saw a doctor at Mayo clinic in Rochester, MN. His diagnosis of me was that I was just depressed. I expected more from a health clinic with the reputation of being one of the finest in the world. It wasn't the clinic it was the doctor. In any case the doctor gave me a prostrate exam, prescription for depression, and sent me on my way. Before I left the examination room I told him that depression is a lot like dandelions, everyone has some and that's OK. Another drug I take is gabapentin. I didn't think it was working until my rheumatologist re-structured how I would be taking it. Unbelievable what a positive change that made. I also take diclofenac sodium for the anklosing spondylitis. That helps with slowing or stopping the progression. I see my rheumatologist for every six months - so important. She has always been available by phone and email and it is not uncommon for her to return my call in the evening while I'm at home and she is still working. During my last visit she adjusted all of my medicine and it is amazing how tweaking things like that can help. It's like tuning a radio signal. As I said, she is adamant about the right kind of exercise and she is so gentle and caring in her encouragement to me. I live in Wisconsin so our winters here can be very harsh. Like many of you, changes in weather and extreme temperatures both ways cause tremendous havoc. When there is a change in the barometric pressure it flattens me. I cannot go to work because I cannot function, have no energy and the drugs don't work. To bed I go for a day or two. Although we have 24 hour gym and fitness centers where I live, I am not likely to go out to exercise. It often takes all my strength just to get out of bed in the morning. So, with my doctor's encouragement, I purchased an exercise machine for my home. In fact it should arrive sometime this week. I am willing to try most anything to improve my health. I have researched diets for people with fibro and do my best to make those changes. My doctor understands the struggle that many of us have with physical activity. She is so confident that my health will improve with the right kind of exercise. I have put my trust in her abilities and experience as a physician. She even says that it is quite possible for me to reduce or eliminate some of the drugs that I am on through the effects of exercise. I pray to God that someday there will be some breakthroughs in the field of medicine that can helps us. It is really hard to understand what is going on with our bodies and there are very few answers.
God bless each and everyone of you.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Thank you for your positive post....indeed you are fortunate to have found such a caring doctor you trust.

How does she know how to tweek your meds to times of day etc and how does this help you?

Good luck with the exercise.....my joints hurt too much for me to exercise now as well as the muscles and walking round the house and standing is a huge effort and sooo painful.

But you are right to do it if you can..i used to walk for 45 minutes regularly and the sense of achievment and staying as fit as possible is so important.

I have never heard of ritalin for fatigue.. maybe its not licenced in the UK for fibro or CFS. Glad it helps.
 

Knowles

New member
Joined
Sep 12, 2016
Messages
8
Reason
DX FIBRO
Diagnosis
02/2014
Country
US
State
WI
Thank you for your positive post....indeed you are fortunate to have found such a caring doctor you trust.

How does she know how to tweek your meds to times of day etc and how does this help you?

Good luck with the exercise.....my joints hurt too much for me to exercise now as well as the muscles and walking round the house and standing is a huge effort and sooo painful.

But you are right to do it if you can..i used to walk for 45 minutes regularly and the sense of achievment and staying as fit as possible is so important.

I have never heard of ritalin for fatigue.. maybe its not licenced in the UK for fibro or CFS. Glad it helps.
Hi Willow,
Ritalin is the brand name for methylphenidate. Methylphenidate is an amphetamine drug, a controlled substance. Ritalin is commonly known for its use with Attention Deficit Disorders. In my thread I said that I hated using it because I know what it is. I take 20mg slow release twice a day. It is the difference between disabling fatigue and being able to hold down a job. I was taking gabapentin only at bedtime. My doctor suggested taking a 300mg capsule in morning and one midday and one late day and 2 or 3 at bedtime. What a difference in managing the pain throughout the day. She also increased the diclofenac sodium and that helps with inflammation in my spine, which also helps with reducing body pain. And she also doubled my anti-depressant. By the way, here in the states we have what is called Health Savings Plans. Money comes out of your paycheck pre-tax into an account that you can use for health related expenses. The exercise equipment that I recently purchased qualified for payment with health savings dollars so I paid for it with tax-free savings. In order to qualify for certain expenses you need something from your doctor saying so.
My next appointment with my rheumatologist is just under six months from now. I fully expect to be a different person physically than I am today. I expect to make her proud. Take care Willow.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Sounds like you have a great doctor and are seeing the benefits. Yes I had heard of ritalin for ADHD but not for fibro or CFS.....I dont think it would suit me personally as i suffer with anxiety and find sleep even with meds very elusive ..but I am glad you have found so much relief.
 
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