I first had a level of Fibromyalgia for 7 years where I could be functional if I took Lyrica and Tylenol at bedtime. Then the combo of cold winters, neck disc degeneration and bone spur pain pushed me into a much higher devilish pain level all over and my PC dr changed my diagnosis to CSS. It’s like an angry hornet that won’t stop stinging us isn’t it? I now have Adrenal exhaustion, POTS, body wasting, lots of food reactions/pain and pancreatic insufficiency.. afternoon heavy sleepiness from the meds I have to use in order to sleep the night before is keeping me from getting anything done. I found that Myofascial massage and even regular massage feel good at the moment but in two hours, there is a hellish pain increase that my nervous system adopts and it never subsides. We live with great frustration don’t we? I send all of you who have CSS my empathy and prayers. I had a blood test ordered by a Functional and Dr to check my brain chemicals and dopamine was way too high. due to pain, he said. And advised me to avoid supplements containing Tyrosine, Ginseng and turmeric bc they boost dopamine and make migraines worse. So I did and found he was right.
I am a retired RN and do medical research often. I’m glad to share my helpful supplements list with you all: Alpha Lipoic Acid, DHA, Bacopa (lowers Dopamine some and boosts brain neuron production), Saffron Extract, B12, Omega 3 fish oil and Ginkgo are Dr Dale Bredesen and Dr Daniel Amen’s favorite supplements for the brain (these two drs are our nation’s top brain drs). I take a great multi-vitamin for women over 50 by Thorne Laboratories. I take Milk Thistle/Dandelion supplement for my liver (important supp). I take extra Vit C by Health Source SuperFoods made from Camu Camu, Amla and Acerola. I rotate it with Vit B Complex. I have histamine intolerance so I have to take a histamine enzyme 15 min before I eat. (If our bodies don’t make their own Histamine Enzyme called Diamine Oxidase, we will have a severe stinging headache after eating foods with high and moderately high amount of histamine. This is a hereditary condition). I take digestive enzymes, HCL and a soil-based probiotic by Just Thrive or Megaspore by Microbiome Labs. All these supplements are sold on Amazon.
One thing is for sure - we must all avoid MSG or we will have terrible headaches and less brain health. Also run from pork, processed foods, seed oils, conventionally fed cows and chicken and food dyes. Eat organic if u can possibly afford it so u can avoid gut destructive glyphosate. Drink a lot of filtered water with lemon each day so u can flush out a lot of chemicals we get through foods, air, heavy metals, plastics and many other sources. I hope this info is a help. God bless all of you!
I have not been officially diagnosed with "central sensitization" but I
know I have it. I have fibromyalgia and with FM, something happens in the
central nervous system so that a person with this condition feels a lot of
pain from a stimuli wherast a "normal" person will feel little or not pain.
We are cursed!!
Yes. As a child I was sensitive emotionally and seasonally. Things in my home started going badly when a was about 6. This kept my brain on alert. At 7 I wanted to die because life had become so dark and painful. I got sick more than other kids.Overtime I think I learned to dissociate from the emotional pain, trying to deal with things rationally. I did not realize I often couldn't access my emotions in the moment. In college I tried to do the internal work of healing. I developed hard to diagnose symptoms of an endocrine nature, and had so many bladder infections...this was a pattern that extended for 40 years. I was diagnosed with fibromyalgia in my mid 30's by a rheumatologist via a reluctant referral from my primary care doc who didn't believe it was a thing. During those decades I had recurrent sinus and bladder infections. Headaches. Unexplained headaches. I've had two sinus surgeries which confirmed extensive disease. A car accident caused carpal tunnel in both wrists which preceded the fibromyalgia symptoms. I have many comorbidities which are common to the clusterfuck of this. I've had numerous trips to ER, often sent by my doctor, with physical symptoms which didn't correlate with lab work or tests. Sometimes CT scans a week or two later WOULD show diverticulitis. But my theory is I can feel things in my body that others cannot at the same stage of disease. That may sound beneficial, but i find it difficult to know if the pain I feel is actually worth investigation. If my body rings alarms prematurely or to misdirect me, that is NOT helpful. Case in point, today I met with friends. I've been isolated in my home and was happy to see these 4. Not long after the party, I began to have chest pain. I have it now again.
Instead of feeling my difficult feelings at not having really caught up with someone, my body gave me chest pain. Now I looked it up. I'm 63. At my age, it's unanimous, go to ER. I did not.
I'm about to have a subtotal colectomy for numerous areas of diverticulosis which have also had active disease. Life on my Left Side is a book title. Just a week ago I thought my surgeon was taking 4-8 inches. Now he's only leaving that much. But he said to me his concerns about my surgery are my pain. Pain explored but found unverifiable by a condition. When your brain becomes hyper vigilant it turns up the volume on symptoms and pain. Pain is normal after this surgery. But my previous pains may recur. And I'm more likely to have phantom pain like amputees. This was a grim forecast. I get bladder pain. A urinalysis only shows an increase in leukocyte esterase. Usually it's tossed. But if allowed to grow in a culture, there is significant bacteria.
None of this is easy. My daughter has similar neurology at work. Some theorize that dealing with trauma, whose memories are stored in the body, can help change the brain. Locked up feelings. Also, some recommend thinking very differently about pain, befriend yourself, observe how you feel but use calming positive language in talking about it. Because the brain shows greater excitability and is more likely to turn up the volume if you use dramatic words vs calming language. Just using calming language and shifting focus can help. 'I feel like I have a wire of fire around my waist' vs 'I'm less comfortable than I'd like to be.'
My daughter referred me to the Curable app and podcasts by the founder Nicole....Exercise, gratitude, some daily activities you look forward to, connection with people, counselling, and journalling are all helpful. I think it's a difficult journey. Find a primary care doc who is supportive, respectful, and understands the complexity this brings to diagnosis and treatment. I've felt very alone in this. And my will to continue becomes impaired. But so far, God helping me I am alive.
My neurologist st Mayo mentioned in his notes so I investigated it. There is a Central Sensiitization Inventory (CSI) that online that you can take and score yourself. It's 25 questions in Part A and Part B is a couple of questions that will just be helpful to the dr.
@want2bme, I moved your message to this discussion where you'll meet @capefibro, @lolomarie and @leh09 who are talking about Central Sensitization and Fibromyalgia.
"Central sensitization has long been recognized as a possible consequence of stroke and spinal cord injury. However, it has become increasingly clear that it plays a role in many different chronic pain disorders. It can occur with chronic low back pain, chronic neck pain , whiplash injuries, chronic tension headaches, migraine headaches, rheumatoid arthritis, osteoarthritis of the knee, endometriosis, injuries sustained in a motor vehicle accident, and after surgeries. Fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome, all seem to have the common denominator of central sensitization as well."
This is very interesting to me. I have posted on different support groups because doctors do not have a clue what is wrong with me. I had a stroke in 1998 (49 years old) It affected my dominant right side. Have had pain on right side since especially right leg & foot. Also never felt good after stroke, hard to describe, but always nauseous with GERD, bowel problems, fatigue. Went to Mayo Clinic one year later, only thing that figured out was maybe had IBS. Tried various antidepressants (made me feel worse) Tried ECT treatments - nothing. Put on Methadone for pain and Alprazolam for anxiety. Hospitalized for hypercalcemia (after diagnosis of osteopenia & told to take more of the Tums that I was taking for GERD) Then diagnosed with hypothyroidism which increased fatigue, caused weight gain, bowel issue (not constipation) Then had my gallbladder removed-had a gallstone size of golf ball. More pain. At the time, a nurse asked if I had fibromyalgia because of pain. When asked doctor at pain center about this, it was dismissed for some reason. So went for number of years just living with these things, taking pain & anxiety meds, feeling lousy & in pain. In 2016, started getting bad lower back pain & sciatica pain in right hip. Found out I had stenosis, had spinal fusion L4-L5. This was a horrible experience, mostly because I was in horrible pain after surgery but everyone just thought I wanted more pain meds. I spent 15 days (10 in rehab) and was about to be sent to a nursing home for more rehab when finally after throwing a fit about the amount of pain I was in, doctor had a MRI done. I had a blood clot in base of spine causing the pain. That really set me back. Also started a long line of specialists because again no one could find anything wrong. Doctor told me maybe I needed therapy. So changed doctors again. Went off pain meds (on Oxycontin & oxycodone), started using medical marijuana. Then covid hit-got first two shots and went from hypothyroid to hyperthyroid. This naturally made me feel worse. Then I caught covid and maybe I have long haul covid. It has taken 3 years to get my thyroid normal? Then I had genetic testing done, found out I have the MTHFR gene variation T/T. Started methylated vitamins, which made me feel little better. But now have osteoporosis & last labs show extremely high PTH levels but slightly elevated calcium. So did 24 urine catch-normal calcium. All I want is to feel better. It's been 26 years and maybe it's my age (75) but I seem to feel worse every day. I am so frustrated by the medical field.
This is very interesting to me. I have posted on different support groups because doctors do not have a clue what is wrong with me. I had a stroke in 1998 (49 years old) It affected my dominant right side. Have had pain on right side since especially right leg & foot. Also never felt good after stroke, hard to describe, but always nauseous with GERD, bowel problems, fatigue. Went to Mayo Clinic one year later, only thing that figured out was maybe had IBS. Tried various antidepressants (made me feel worse) Tried ECT treatments - nothing. Put on Methadone for pain and Alprazolam for anxiety. Hospitalized for hypercalcemia (after diagnosis of osteopenia & told to take more of the Tums that I was taking for GERD) Then diagnosed with hypothyroidism which increased fatigue, caused weight gain, bowel issue (not constipation) Then had my gallbladder removed-had a gallstone size of golf ball. More pain. At the time, a nurse asked if I had fibromyalgia because of pain. When asked doctor at pain center about this, it was dismissed for some reason. So went for number of years just living with these things, taking pain & anxiety meds, feeling lousy & in pain. In 2016, started getting bad lower back pain & sciatica pain in right hip. Found out I had stenosis, had spinal fusion L4-L5. This was a horrible experience, mostly because I was in horrible pain after surgery but everyone just thought I wanted more pain meds. I spent 15 days (10 in rehab) and was about to be sent to a nursing home for more rehab when finally after throwing a fit about the amount of pain I was in, doctor had a MRI done. I had a blood clot in base of spine causing the pain. That really set me back. Also started a long line of specialists because again no one could find anything wrong. Doctor told me maybe I needed therapy. So changed doctors again. Went off pain meds (on Oxycontin & oxycodone), started using medical marijuana. Then covid hit-got first two shots and went from hypothyroid to hyperthyroid. This naturally made me feel worse. Then I caught covid and maybe I have long haul covid. It has taken 3 years to get my thyroid normal? Then I had genetic testing done, found out I have the MTHFR gene variation T/T. Started methylated vitamins, which made me feel little better. But now have osteoporosis & last labs show extremely high PTH levels but slightly elevated calcium. So did 24 urine catch-normal calcium. All I want is to feel better. It's been 26 years and maybe it's my age (75) but I seem to feel worse every day. I am so frustrated by the medical field.
It has been 10 years post stroke for me, and so many of your ailments apply to me too. There is no joy in waking up because the stroke after effects never leave. I take nothing for pain, as I don't tolerate serious pain medications well. You wrote "never felt good after stroke" and that sums it up for me too. The right air pressure on any given day lets me feel better, and pleasant distractions are my two effective "medicines". Stress adds to the pain, so I try to avoid it.
When I think I got a raw deal, and how inept the doctor at the ER was who first treated me, I think of how lucky I am to have lived through the stroke, and all the family events I have lived to see since that epic event. Recently my husband and I (married 60 years) had our first great grandchild.
Your wrote about your experiences so well. Thank you for sharing. Knowing the pain of others is somehow comforting as we endure our own.
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Very helpful note. I will surely look into these supplements. I have most of your symptoms including histamine allergies. Also fibromyalgia. Thanks.
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4 ReactionsYes. As a child I was sensitive emotionally and seasonally. Things in my home started going badly when a was about 6. This kept my brain on alert. At 7 I wanted to die because life had become so dark and painful. I got sick more than other kids.Overtime I think I learned to dissociate from the emotional pain, trying to deal with things rationally. I did not realize I often couldn't access my emotions in the moment. In college I tried to do the internal work of healing. I developed hard to diagnose symptoms of an endocrine nature, and had so many bladder infections...this was a pattern that extended for 40 years. I was diagnosed with fibromyalgia in my mid 30's by a rheumatologist via a reluctant referral from my primary care doc who didn't believe it was a thing. During those decades I had recurrent sinus and bladder infections. Headaches. Unexplained headaches. I've had two sinus surgeries which confirmed extensive disease. A car accident caused carpal tunnel in both wrists which preceded the fibromyalgia symptoms. I have many comorbidities which are common to the clusterfuck of this. I've had numerous trips to ER, often sent by my doctor, with physical symptoms which didn't correlate with lab work or tests. Sometimes CT scans a week or two later WOULD show diverticulitis. But my theory is I can feel things in my body that others cannot at the same stage of disease. That may sound beneficial, but i find it difficult to know if the pain I feel is actually worth investigation. If my body rings alarms prematurely or to misdirect me, that is NOT helpful. Case in point, today I met with friends. I've been isolated in my home and was happy to see these 4. Not long after the party, I began to have chest pain. I have it now again.
Instead of feeling my difficult feelings at not having really caught up with someone, my body gave me chest pain. Now I looked it up. I'm 63. At my age, it's unanimous, go to ER. I did not.
I'm about to have a subtotal colectomy for numerous areas of diverticulosis which have also had active disease. Life on my Left Side is a book title. Just a week ago I thought my surgeon was taking 4-8 inches. Now he's only leaving that much. But he said to me his concerns about my surgery are my pain. Pain explored but found unverifiable by a condition. When your brain becomes hyper vigilant it turns up the volume on symptoms and pain. Pain is normal after this surgery. But my previous pains may recur. And I'm more likely to have phantom pain like amputees. This was a grim forecast. I get bladder pain. A urinalysis only shows an increase in leukocyte esterase. Usually it's tossed. But if allowed to grow in a culture, there is significant bacteria.
None of this is easy. My daughter has similar neurology at work. Some theorize that dealing with trauma, whose memories are stored in the body, can help change the brain. Locked up feelings. Also, some recommend thinking very differently about pain, befriend yourself, observe how you feel but use calming positive language in talking about it. Because the brain shows greater excitability and is more likely to turn up the volume if you use dramatic words vs calming language. Just using calming language and shifting focus can help. 'I feel like I have a wire of fire around my waist' vs 'I'm less comfortable than I'd like to be.'
My daughter referred me to the Curable app and podcasts by the founder Nicole....Exercise, gratitude, some daily activities you look forward to, connection with people, counselling, and journalling are all helpful. I think it's a difficult journey. Find a primary care doc who is supportive, respectful, and understands the complexity this brings to diagnosis and treatment. I've felt very alone in this. And my will to continue becomes impaired. But so far, God helping me I am alive.
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Helpful -
Hug
7 ReactionsMy neurologist st Mayo mentioned in his notes so I investigated it. There is a Central Sensiitization Inventory (CSI) that online that you can take and score yourself. It's 25 questions in Part A and Part B is a couple of questions that will just be helpful to the dr.
-
Like -
Helpful -
Hug
5 ReactionsThis is very interesting to me. I have posted on different support groups because doctors do not have a clue what is wrong with me. I had a stroke in 1998 (49 years old) It affected my dominant right side. Have had pain on right side since especially right leg & foot. Also never felt good after stroke, hard to describe, but always nauseous with GERD, bowel problems, fatigue. Went to Mayo Clinic one year later, only thing that figured out was maybe had IBS. Tried various antidepressants (made me feel worse) Tried ECT treatments - nothing. Put on Methadone for pain and Alprazolam for anxiety. Hospitalized for hypercalcemia (after diagnosis of osteopenia & told to take more of the Tums that I was taking for GERD) Then diagnosed with hypothyroidism which increased fatigue, caused weight gain, bowel issue (not constipation) Then had my gallbladder removed-had a gallstone size of golf ball. More pain. At the time, a nurse asked if I had fibromyalgia because of pain. When asked doctor at pain center about this, it was dismissed for some reason. So went for number of years just living with these things, taking pain & anxiety meds, feeling lousy & in pain. In 2016, started getting bad lower back pain & sciatica pain in right hip. Found out I had stenosis, had spinal fusion L4-L5. This was a horrible experience, mostly because I was in horrible pain after surgery but everyone just thought I wanted more pain meds. I spent 15 days (10 in rehab) and was about to be sent to a nursing home for more rehab when finally after throwing a fit about the amount of pain I was in, doctor had a MRI done. I had a blood clot in base of spine causing the pain. That really set me back. Also started a long line of specialists because again no one could find anything wrong. Doctor told me maybe I needed therapy. So changed doctors again. Went off pain meds (on Oxycontin & oxycodone), started using medical marijuana. Then covid hit-got first two shots and went from hypothyroid to hyperthyroid. This naturally made me feel worse. Then I caught covid and maybe I have long haul covid. It has taken 3 years to get my thyroid normal? Then I had genetic testing done, found out I have the MTHFR gene variation T/T. Started methylated vitamins, which made me feel little better. But now have osteoporosis & last labs show extremely high PTH levels but slightly elevated calcium. So did 24 urine catch-normal calcium. All I want is to feel better. It's been 26 years and maybe it's my age (75) but I seem to feel worse every day. I am so frustrated by the medical field.
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Helpful -
Hug
2 ReactionsIt has been 10 years post stroke for me, and so many of your ailments apply to me too. There is no joy in waking up because the stroke after effects never leave. I take nothing for pain, as I don't tolerate serious pain medications well. You wrote "never felt good after stroke" and that sums it up for me too. The right air pressure on any given day lets me feel better, and pleasant distractions are my two effective "medicines". Stress adds to the pain, so I try to avoid it.
When I think I got a raw deal, and how inept the doctor at the ER was who first treated me, I think of how lucky I am to have lived through the stroke, and all the family events I have lived to see since that epic event. Recently my husband and I (married 60 years) had our first great grandchild.
Your wrote about your experiences so well. Thank you for sharing. Knowing the pain of others is somehow comforting as we endure our own.
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Helpful -
Hug
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