Aa
SUFFERING!!!
does anybody know just when you start to feel better? My hubby finished his tx on April 2013 and is still suffering. He is in pain at night so only ever gets a few hours sleep and the pain won't go away until he gets up. The pain runs through the whole of his body he constantly suffers constipation even though he eats plenty of fresh fruit and veg(married to a chef!) he had never suffered constipation before tx. he as tried every drug combination what docs throw at him and all useless or had to stop because of severe skin rash- Lyrica the rash was worse then the incivek rash. Help we at our wits end and we cannot get a reveral to a rheumatologist because it is all in his brain fogged mind! Any suggestions will be well and truely appreciated Regards Jules xx
There is a stomach disorder called gastroparesis which can be caused my autoimmune diseases too. Or it can occur alone. I get that when I have a flare.
Thanks Deb.
As to chef lady's husband, I wonder if the constipation might not be coming from MS-like symptoms so often triggered by these drugs. Husband apparently suffers autoimmune pain disorders, so body is attacking muscles (fibromyalgia) and / or bones/joints (arthritis).
Brain is addled. Porbably also inflamed. Stands to reason nerves would also be inflamed.
I have suffered the same thing, post-treatment. I was, to say the least, super regular before hand. Now sometimes food just stops in my digestive tract, doesn't move. I suspect MS-like symptoms, but I have also had other MS-like symptoms - tremors and spasm in my hands and fingers, foot neuropathies, intense cramping in legs unlike anything ever experienced before.
Has to eat non-inflammatory. Has to ID food triggers. I'd bet almost any amount of money he has some. For me it's certain kinds of dairy.
He's battling for a life an due has to work hard. Read this article from USC researchers on fasting. Very amazing new discovery
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
Also might want to consider trying LDN therapy (low dose naltrexone). Naltrexone is an opiate receptor blocker - I think I have that right. They make addicts in treatments take it, 50 mg. pills. It blocks their bodies from being able to feel heroin, oxycontin, etc. so even if they slip or use, they don't get high.
LDN therapy is a low dose, typically around 2.5 to 4 mg I think, taken at bedtime. So it stays in your blood while you sleep but is gone by morning. When you sleep is when your body makes endorphins, which in turn influence the immune system. LDN blocks your body from detecting or measuring endorphins at night, so it causes the body to think the level is lower than it is, thus stimulating production of endorphins while you sleep, thus modifying your immune system.
I did it when I was really bad post-treatment (as opposed to just being kind of bad now - ha ha ). It really helped, especially w/ depersonalization syndrome. Sometimes it helps, sometimes it doesn't and its effect is a bit unpredictable. It has been recognized as very safe by physicians, because one takes such a low dose. It costs about $110 for three months.
For some it cures MS or psoriasis or whatever. For others, it's not much help.
It's funny though. After doing LDN for over a year or two though, I started developing constipation and increasing insomnia. I recently stopped LDN and "voila!", plumbing was working, sleep was better. My body is no longer at the place it was when I started LDN, so maybe it was telling me to stop using it. So I am off it now, but man was it a lifesaver when I started. Can't say enough how much it helped at first.
LDN therapy website: http://www.lowdosenaltrexone.org
Finally, of course thyroid, but you probably knew that.
good luck.
As to chef lady's husband, I wonder if the constipation might not be coming from MS-like symptoms so often triggered by these drugs. Husband apparently suffers autoimmune pain disorders, so body is attacking muscles (fibromyalgia) and / or bones/joints (arthritis).
Brain is addled. Porbably also inflamed. Stands to reason nerves would also be inflamed.
I have suffered the same thing, post-treatment. I was, to say the least, super regular before hand. Now sometimes food just stops in my digestive tract, doesn't move. I suspect MS-like symptoms, but I have also had other MS-like symptoms - tremors and spasm in my hands and fingers, foot neuropathies, intense cramping in legs unlike anything ever experienced before.
Has to eat non-inflammatory. Has to ID food triggers. I'd bet almost any amount of money he has some. For me it's certain kinds of dairy.
He's battling for a life an due has to work hard. Read this article from USC researchers on fasting. Very amazing new discovery
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
Also might want to consider trying LDN therapy (low dose naltrexone). Naltrexone is an opiate receptor blocker - I think I have that right. They make addicts in treatments take it, 50 mg. pills. It blocks their bodies from being able to feel heroin, oxycontin, etc. so even if they slip or use, they don't get high.
LDN therapy is a low dose, typically around 2.5 to 4 mg I think, taken at bedtime. So it stays in your blood while you sleep but is gone by morning. When you sleep is when your body makes endorphins, which in turn influence the immune system. LDN blocks your body from detecting or measuring endorphins at night, so it causes the body to think the level is lower than it is, thus stimulating production of endorphins while you sleep, thus modifying your immune system.
I did it when I was really bad post-treatment (as opposed to just being kind of bad now - ha ha ). It really helped, especially w/ depersonalization syndrome. Sometimes it helps, sometimes it doesn't and its effect is a bit unpredictable. It has been recognized as very safe by physicians, because one takes such a low dose. It costs about $110 for three months.
For some it cures MS or psoriasis or whatever. For others, it's not much help.
It's funny though. After doing LDN for over a year or two though, I started developing constipation and increasing insomnia. I recently stopped LDN and "voila!", plumbing was working, sleep was better. My body is no longer at the place it was when I started LDN, so maybe it was telling me to stop using it. So I am off it now, but man was it a lifesaver when I started. Can't say enough how much it helped at first.
LDN therapy website: http://www.lowdosenaltrexone.org
Finally, of course thyroid, but you probably knew that.
good luck.
Hi Cheflady, believe it or not most fruits and vegetables do very little for constipation. Fiber is the cure plus lots of fluids. Benefiber is great because it dissolves in water. and has no grit or taste. Oatmeal, bran etc work great but as Dr Jones says it can take up to 6 weeks for those to work consistently. Nothing worked until I took his advice and took a little of milk of magnesia or prune juice. Here's a short video were he lays it all out. People should be having three movements a day and the run of thumb is you pass what ever you take in every 24 hours. Hope this helps and don't give up because it can take a couple of months to get real regular.
http://cureconstipationnow.com/
http://cureconstipationnow.com/
Hi Scottie24,
At the moment in England, we can only register with a doctors practice in our area, I'd say its about 2 mile radius from our home, then we are deemed too far, but as from October we can register at any doctors in our city so we will have a much bigger choice
At the moment in England, we can only register with a doctors practice in our area, I'd say its about 2 mile radius from our home, then we are deemed too far, but as from October we can register at any doctors in our city so we will have a much bigger choice
The rules are changing in October this year, we will be able to register at any doctors. You can just say its nearer to your work or family etc..
Best of luck Deb
Best of luck Deb
Hi I was thinking of you and remembered that I started taking some probiotics. I ate a lot of yogurt as well, that helped with any digestive problems and I did start to feel better. A couple of people I know tried the same. For aches and pains at night I tried calcium and magnesium. For my fatigue and brain fog I tried NADH (an enzyme). It all helped me as well as time. I hope he can get some relief. Is he still drinking water? That is important as well. Dehydration can cause aches and pains too.
My best to you
Dee
My best to you
Dee
I seem to have similar symptoms. Lack of sleep. pain in th body, severe constipation and severe fatigue. Not to mention weight gain - 8 kg since end of Dec.
The results of my numerous tests are showing that although ANA and CRP are negative, I do have some autoimmune activity although they could not precisely diagnose it. Either or, tx for that would have been anti inflammatory pills which I did not want to take.
I have started a new job last week and I decided to use the bus and train instead of driving. Oooo big mistake - even with this low level effort everything flared. I had a few rough nights. It seems that having those extra hours at work and the physical activity are a bit to much
In addition to the autoimmune activity , tests also showed very low iron and possible Hashimoto thyroid disease although the test is not very specific
Why I am saying all this? Because constipation, fatigue, lack of sleep and could be low thyroid issue.
For the pain in the body - I have noticed that I do sleep a little bit better and I have less pain if before going to bed I take some baking soda with some water. That tells me that the acidity in the body has something to do with it.
I am also taking iron supplements but is early days so no improvement till now
For thyroid I am taking selenium as this appear to be the right approach. Just started and it seems that it takes at least 3 months of supplementation to have the symptoms go away
I guess you can try and convince the doctor to do an iron test. And if they have not done a CRP and an ANA test they cannot ignore the complains. Have the write down why they think is in his brain and if so how they explain the pain. I know they are incompetent not to mention bully and abusers in many cases but they will usually agree to simple tests just to have you out of their way. The majority of them will agree to an iron test, thyroid test and a CRP.
If low iron maybe iron supplements, selenium , baking soda and probiotics might help and you could have some improvements
The results of my numerous tests are showing that although ANA and CRP are negative, I do have some autoimmune activity although they could not precisely diagnose it. Either or, tx for that would have been anti inflammatory pills which I did not want to take.
I have started a new job last week and I decided to use the bus and train instead of driving. Oooo big mistake - even with this low level effort everything flared. I had a few rough nights. It seems that having those extra hours at work and the physical activity are a bit to much
In addition to the autoimmune activity , tests also showed very low iron and possible Hashimoto thyroid disease although the test is not very specific
Why I am saying all this? Because constipation, fatigue, lack of sleep and could be low thyroid issue.
For the pain in the body - I have noticed that I do sleep a little bit better and I have less pain if before going to bed I take some baking soda with some water. That tells me that the acidity in the body has something to do with it.
I am also taking iron supplements but is early days so no improvement till now
For thyroid I am taking selenium as this appear to be the right approach. Just started and it seems that it takes at least 3 months of supplementation to have the symptoms go away
I guess you can try and convince the doctor to do an iron test. And if they have not done a CRP and an ANA test they cannot ignore the complains. Have the write down why they think is in his brain and if so how they explain the pain. I know they are incompetent not to mention bully and abusers in many cases but they will usually agree to simple tests just to have you out of their way. The majority of them will agree to an iron test, thyroid test and a CRP.
If low iron maybe iron supplements, selenium , baking soda and probiotics might help and you could have some improvements
Thank-you once again for the sound advice.We will keep pushing and we will keep trying.We keep seeing different docs at the practice,and we running out of them!. Thing is over in Britain unless you can afford to go private then you can only register with a practice that is local to your area they say the reason for it is so if you need a home visit then they have'nt got far to travel. CRAZY and we cannot afford to go privateHe is back at docs next week and we will push for rheumatologist. Hubby always been so fit in 30 odd yrs of knowing him he had only been to docs 3 times prior tx so i would say that speaks volumes for a 63yr old about his physical health thanxs guys Love Jules xxx
I am sorry your husband is still suffering so much. While it can take a long time to recover from the treatments, it has been over a year now for him. He should be seeing improvement.
I am appalled that he cannot get a referral to a Rheumatologist. It is well known that Hepatitis C as well as Interferon can individually trigger Autoimmune Disorders (and other disorders). He had both Hep C and was treated with Interferon so he has double the chance of triggering an Autoimmune Disorder. I would keep pushing for a referral to both a Rheumatologist and a Neurologist. He definitely should be tested for Autoimmune Disorders and he should be evaluated for various Autoimmune Disorders as well as Fibromyalgia and Neurological Disorders.
Here is a link to information on Fibromyalgia:
http://umm.edu/health/medical/reports/articles/fibromyalgia
Those doctors really need to rule out Autoimmune Disorders as well as Fibromyalgia and Neurological Disorders.
As a side note, none of my local doctors would listen to me either and would not refer me or do further testing. So I switched doctors and went to the University of Mn.. Once at the University I asked the ENT doctor there to refer me to a Rheumatologist, which she did,The Rheumatologist did a thorough exam and ran a truck load of tests. I was diagnosed with an Autoimmune Disorder as soon as the lab tests came back, but even before that, she suspected an Autoimmune Disease just from my history and physical. I have fired all of my local doctors and now go to the University for my medical care.
I know you have a different health care system, but do keep pushing for referrals to Rheumatology and Neurology.
Wishing you and your husband the best.
I am appalled that he cannot get a referral to a Rheumatologist. It is well known that Hepatitis C as well as Interferon can individually trigger Autoimmune Disorders (and other disorders). He had both Hep C and was treated with Interferon so he has double the chance of triggering an Autoimmune Disorder. I would keep pushing for a referral to both a Rheumatologist and a Neurologist. He definitely should be tested for Autoimmune Disorders and he should be evaluated for various Autoimmune Disorders as well as Fibromyalgia and Neurological Disorders.
Here is a link to information on Fibromyalgia:
http://umm.edu/health/medical/reports/articles/fibromyalgia
Those doctors really need to rule out Autoimmune Disorders as well as Fibromyalgia and Neurological Disorders.
As a side note, none of my local doctors would listen to me either and would not refer me or do further testing. So I switched doctors and went to the University of Mn.. Once at the University I asked the ENT doctor there to refer me to a Rheumatologist, which she did,The Rheumatologist did a thorough exam and ran a truck load of tests. I was diagnosed with an Autoimmune Disorder as soon as the lab tests came back, but even before that, she suspected an Autoimmune Disease just from my history and physical. I have fired all of my local doctors and now go to the University for my medical care.
I know you have a different health care system, but do keep pushing for referrals to Rheumatology and Neurology.
Wishing you and your husband the best.
Hi there. I know it's been a long year dealing with the after effects of treatment. What Dee said in here post is what I also have done. I think it's really important you take a non iron multiple vitamin. Also, drink lots of water. Some of the problems your husband is having seem to happen to me also. It has been a very long time to get back my normal. I can say that after a year post treatment things started getting much better. Around 18 months life begins to be as you remembered. Memory is better and the brain fog lifts. I have read that if you have post treatment issues a two years....they my be what you have to live with. I was a reasonably health person before treatment. I was shocked by the post treatment experience. Give it some more time before excepting you might have to live with the effects. Your still early in the game.
Best to you and your husbands
Best to you and your husbands
Hello, I am so sorry to hear your husband is having problems. Has he noticed any improvement since finishing tx? I am sorry he can not get in to see a rheumatologist. Are you saying the doctor won't refer him because he does not believe it is real? It is real. Can you be allowed to see a hepatologist? change doctors?
After treating I had various problems. One thing that helped with the constipation was taking probiotics. In addition I ate yogurt till it was coming out of my ears :) I think it was because I had gotten mouth sores and that was very soothing. I also continued to force the water. I took extra calcium, magnesium, vitamin D as well as a daily vitamin without iron. I hate to say that it took me 18 months to get better and it seemed to coincide with taking the probiotics. We talked about this in the cirrhosis forum.
Again, I am so sorry. I had hoped he would be feeling better by now
My thoughts and prayers are with you both, Dee
After treating I had various problems. One thing that helped with the constipation was taking probiotics. In addition I ate yogurt till it was coming out of my ears :) I think it was because I had gotten mouth sores and that was very soothing. I also continued to force the water. I took extra calcium, magnesium, vitamin D as well as a daily vitamin without iron. I hate to say that it took me 18 months to get better and it seemed to coincide with taking the probiotics. We talked about this in the cirrhosis forum.
Again, I am so sorry. I had hoped he would be feeling better by now
My thoughts and prayers are with you both, Dee
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