Hi all,
During my MC diagnosis I have experienced a lot of symptoms. I could not stand upright for more than two minutes, I could not walk straight without stumbling and having the feeling of falling, I could not go from sitting to standing position without having a feeling of falling. I guess this is familiar to many of you.
When blow drying my hear, I have to have my hands above my head. That was impossible one year ago, and this is still the only thing that has not improved.
Has anyone here experienced the same? I have improved in almost all other issues, but I cannot keep my hands above my head for more than 1-2 minutes.
Is this due to a blood pressure issue, or a deficiency I'm not aware of, or does this come with age?
I would love to know if this is common or "just me".
Lilia
Holding my arms above my head
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Holding my arms above my head
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
I don't want to scare you, but the muscle weakness symptoms you describe are classic for myositis - polymyositis or Dermatomyositis. I have Dermatomyositis. You need not have extreme muscle weakness to have autoimmune inflammation of the muscles. Sometimes it's only unusual muscle soreness after exercise, or inability to do repetitive motions like sweeping or shoveling snow due to weak shoulder muscles. Myositis generally affects the "proximal muscles" - those closest to the body, so shoulders, upper thighs/hips, and sometimes neck and throat. You might ask your doctor to check your muscle enzyme levels (any elevation can mean muscle breakdown) or ANA- anti-nuclear antibodies.
I don't want to scare you, but the muscle weakness symptoms you describe are classic for myositis - polymyositis or Dermatomyositis. I have Dermatomyositis. You need not have extreme muscle weakness to have autoimmune inflammation of the muscles. Sometimes it's only unusual muscle soreness after exercise, or inability to do repetitive motions like sweeping or shoveling snow due to weak shoulder muscles. Myositis generally affects the "proximal muscles" - those closest to the body, so shoulders, upper thighs/hips, and sometimes neck and throat. You might ask your doctor to check your muscle enzyme levels (any elevation can mean muscle breakdown) or ANA- anti-nuclear antibodies.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Lilia,
Is the feeling similar to tiredness? I had the experience of extreme bouts of tiredness resulting from low blood pressure. My need to lie down felt urgent. We own an electronic blood pressure cuff but when I'm symptomatic, my BP sometimes drops so low that it won't register on the electronic machine. When we use a traditional cuff, I find that my BP is sometimes a low as 70/40. This is particularly true in the evening after dinner, in my case. I am two years post-diagnosis now and the symptom is improving. Putting your arms above your head or standing suddenly can cause low BP. Can you take your BP when you feel that way? If you lie down and elevate your legs higher than your body, does it help? Sometimes I lie on the floor and put my legs on the sofa or I lie on a bed an put my feet on the wall or headboard to raise my BP.
Can you increase your fluid intake? It might help. If you don't have HIGH BP, you might try increasing your salt intake a bit too. That's what I do. If you are on BP medication, you might want to discuss your symptoms with your doctor. You might need to reduce your dosage.
Is the feeling similar to tiredness? I had the experience of extreme bouts of tiredness resulting from low blood pressure. My need to lie down felt urgent. We own an electronic blood pressure cuff but when I'm symptomatic, my BP sometimes drops so low that it won't register on the electronic machine. When we use a traditional cuff, I find that my BP is sometimes a low as 70/40. This is particularly true in the evening after dinner, in my case. I am two years post-diagnosis now and the symptom is improving. Putting your arms above your head or standing suddenly can cause low BP. Can you take your BP when you feel that way? If you lie down and elevate your legs higher than your body, does it help? Sometimes I lie on the floor and put my legs on the sofa or I lie on a bed an put my feet on the wall or headboard to raise my BP.
Can you increase your fluid intake? It might help. If you don't have HIGH BP, you might try increasing your salt intake a bit too. That's what I do. If you are on BP medication, you might want to discuss your symptoms with your doctor. You might need to reduce your dosage.
Zizzle:
I will ask my doctor to check my muscle enzyme levels or ANA- anti-nuclear antibodies. I have no strength in my arms, legs, thighs and feet at all!
DJ:
I have had low BP for as long as I can remember. Once I was in a hospital, they measured it 3 times. They couldn't believe I was "alive".
I will try to hold my feet up high, and add some salt to my diet.
Fortunately, I don't tak any medication :-)
Lilia
I will ask my doctor to check my muscle enzyme levels or ANA- anti-nuclear antibodies. I have no strength in my arms, legs, thighs and feet at all!
DJ:
I have had low BP for as long as I can remember. Once I was in a hospital, they measured it 3 times. They couldn't believe I was "alive".
I will try to hold my feet up high, and add some salt to my diet.
Fortunately, I don't tak any medication :-)
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
DJ,
Low BP can be caused by several issues, including hyperthyroidism (or overtreated hypothyroidism), but please be aware that low BP can be a marker of magnesium deficiency.
Lilia,
Are you using a magnesium supplement?
Tex
Low BP can be caused by several issues, including hyperthyroidism (or overtreated hypothyroidism), but please be aware that low BP can be a marker of magnesium deficiency.
Lilia,
Are you using a magnesium supplement?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex'tex wrote:DJ,
Low BP can be caused by several issues, including hyperthyroidism (or overtreated hypothyroidism), but please be aware that low BP can be a marker of magnesium deficiency.
Lilia,
Are you using a magnesium supplement?
Tex
I take Magnesium. I did take 400 mg, but after your post regarding the importance of magnesium and you having trouble breathing, I increased to 800 mg.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
I thought that you were, but my memory is not as reliable as it used to be. I still suspect (as we discussed a few months ago) that you may have hyperthyroidism.
Tex
I thought that you were, but my memory is not as reliable as it used to be. I still suspect (as we discussed a few months ago) that you may have hyperthyroidism.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I do too. Very thirsty during night, can't gain weight (the 12 kilos I lost in 2013 are impossible to get back).tex wrote:Lilia,
I thought that you were, but my memory is not as reliable as it used to be. I still suspect (as we discussed a few months ago) that you may have hyperthyroidism.
Tex
Sleep a lot, restless, feeling "weak".
What is the most reliable test? I've suspected this before and tested it, but the tests always come back normal.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
If everything except your thyroid is functioning normally, then your thyroid stimulating hormone (TSH) should be very low (below range). However, if all your numbers are normal, it's possible that you might have a rare syndrome known as thyroid hormone resistance. With thyroid hormone resistance, the feedback loop is interrupted, so that the hypothalamus and pituitary cannot properly regulate thyroid output. IOW, thyroid stimulating hormone (TSH) and thyrotropin releasing hormone (TRH) numbers may be normal, but the thyroid output is unregulated.
Your doctor should palpate or otherwise look for nodules on your thyroid. Nodules can behave as though they are tiny, uncontrolled thyroid glands. IOW they can produce excess amounts of thyroxine (T4) and triiodothyronine (T3), and their production cannot be regulated by normal feedback to the pituitary gland and the hypothalamus.
If your doctor will test you for thyroid antibodies, she or he might find that you are producing antibodies against your thyroid, and this could be the cause of your problem (you might have Grave's disease, for example).
Tex
If everything except your thyroid is functioning normally, then your thyroid stimulating hormone (TSH) should be very low (below range). However, if all your numbers are normal, it's possible that you might have a rare syndrome known as thyroid hormone resistance. With thyroid hormone resistance, the feedback loop is interrupted, so that the hypothalamus and pituitary cannot properly regulate thyroid output. IOW, thyroid stimulating hormone (TSH) and thyrotropin releasing hormone (TRH) numbers may be normal, but the thyroid output is unregulated.
Your doctor should palpate or otherwise look for nodules on your thyroid. Nodules can behave as though they are tiny, uncontrolled thyroid glands. IOW they can produce excess amounts of thyroxine (T4) and triiodothyronine (T3), and their production cannot be regulated by normal feedback to the pituitary gland and the hypothalamus.
If your doctor will test you for thyroid antibodies, she or he might find that you are producing antibodies against your thyroid, and this could be the cause of your problem (you might have Grave's disease, for example).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Also, Grave's disease, and certain conditions that involve thyroid nodules can result in a condition known as thyrotoxic myopathy (TM), which is a neuromuscular disorder that develops due to the overproduction of the thyroid hormone thyroxine (T4). TM is also known as hyperthyroid myopathy, and it causes muscle weakness. Of course there are other problems that lead to muscle weakness and muscle tissue breakdown, but there's a good chance that your symptoms are related to a thyroid problem.
You really need to rattle some cages and try to get your doctors to get serious about checking all this out, and start treating this problem before your muscle damage becomes severe.
Tex
You really need to rattle some cages and try to get your doctors to get serious about checking all this out, and start treating this problem before your muscle damage becomes severe.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.