I've been struggling with the thought of making an appointment with my PCP for a few months now. Ever since my son was dx with UC and autoimmune hepatitis in addition to his PSC, I'be been wondering if I am doing myself more harm than good by avoiding medications. It really hit home to hear the doctors explain to my son about keeping the inflammation down since his body is attacking itself (liver) in many ways.
I have been in a lot of pain for quite some time but have been touching it out because taking more drugs scares me. I cancelled my sleep study since I knew I would have immediate morning issues and the thought of being connected to many wires and unable to get to the bathroom was distressing. My sleep is poor due to the muscle pains and gut gurgling if I go too long without taking my entocort so I wake frequently. In addition, my husband snores and my three cats don't help. A sleep study will not shed any new light on that situation.
I take entocort, vit D, magnesium and am good on my Bs (actually high with the B12 without supplementation). I've been taking iron and my levels are slowly rising but I am still wiped out. I am not able to take it three times a day as my PCP wa to because of the timing of my thyroid meds. I tried taking it twice a day but went into a mild flare. I'm not sure if the iron was the cause but it got better once I went back to once a day. Afraid to increase it again.
I was able to get the cytomel (safe generic) in addition to the levothyroxine but I still feel it is not enough. There is no way my endo will increase it any more since he was opposed to it in the first place. My free T3 rose slightly but am still in the middle of the normal range when I was hoping to get to the higher end.
I have muscle and joint pain (no redness or swelling) that is constant and rotates body parts. In particular, my fingers, neck & shoulders, and more recently my knees and foot. I have a stabbing pain at in the middle of the ball of my foot that is driving me crazy. It also burns. My finger tips burn and the carpel tunnel-like pain bothers my wrists. I wake up with numb arms and fingers. I am a mess but keep plugging along.
I walk all day long and do a lot of heavy lifting. I keep thinking about what happens when the pain gets to be debilitating?
None of this started until after my thyroid was removed in 2013. I've come across some articles that pointed out that the body often finds other targets once the thyroid "issue" is solved, shoulder and neck pains are common, as well as carpel tunnel. Some issues can be resolved with the correct thyroid meds but it that or autoimmune.
Should I ask for something like Humera (spelling?) to see if I can get the pain minimized or will I be opening the door to more problems? Is there a better drug to ask for in my situation?
Any insight would be appreciated. In the past all the rheumatoid bloodwork has always come back negative.
When do I throw in the towel? More autoimmune issues- Lupus?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
When do I throw in the towel? More autoimmune issues- Lupus?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Deb
firstly a big big Hug
what is happening to you sounds like me 3 years ago, high level renal impairment (unknown cause) lichen sclorsis flares, anal fissure, major fibromyalgia flare with pain, headaches, sleep interruption, and the anxiety and depression affecting me big time where I struggled to get through each day.
didnt help me mentally, emotionally and physically that I got made redundant and had to move interstate...
for me, the turning point to this chronic AI issues spiral was sorting out the Pyrrolle and Methylation issues. Fixing nutritional deficiencies,
the other thing that I think was key was chelating toxins and toxic metals. removing inflammation triggers from the body.
the sucky part like life with MC, easier said than done, and it took me over 12 months to get things at a good level...
21 months down the track I have just started seeing a Chiro/Kinesiologist - she has a great assessment tool to ascertain where there structural issues are and linkage with nervous system down the spine, interestingly the weakness down my left side was so bad it could not do the assessment, we had to use my right side. This weakness affects my balance, is affecting the message system to my organs, and explains other fibromyalgia symptoms...
At first there was some relief that there was validation/a reason for some of my ongoing symptoms, and then there was the realisation that years of health issues have caused damage, and even with what i have done over the past 21 months, there is still a way to go to optimised wellness....
I get it, why us? years of constant issues does your head in (and your heart) no one sees how much energy and time we put into 'getting by'
dont throw the towel in,
maybe consider the immune suppressant meds, Humira or Imuran.
I know that Nancy has had good success using Imuran with no issues on her Liver.
hope this helps
healing hugs
firstly a big big Hug
what is happening to you sounds like me 3 years ago, high level renal impairment (unknown cause) lichen sclorsis flares, anal fissure, major fibromyalgia flare with pain, headaches, sleep interruption, and the anxiety and depression affecting me big time where I struggled to get through each day.
didnt help me mentally, emotionally and physically that I got made redundant and had to move interstate...
for me, the turning point to this chronic AI issues spiral was sorting out the Pyrrolle and Methylation issues. Fixing nutritional deficiencies,
the other thing that I think was key was chelating toxins and toxic metals. removing inflammation triggers from the body.
the sucky part like life with MC, easier said than done, and it took me over 12 months to get things at a good level...
21 months down the track I have just started seeing a Chiro/Kinesiologist - she has a great assessment tool to ascertain where there structural issues are and linkage with nervous system down the spine, interestingly the weakness down my left side was so bad it could not do the assessment, we had to use my right side. This weakness affects my balance, is affecting the message system to my organs, and explains other fibromyalgia symptoms...
At first there was some relief that there was validation/a reason for some of my ongoing symptoms, and then there was the realisation that years of health issues have caused damage, and even with what i have done over the past 21 months, there is still a way to go to optimised wellness....
I get it, why us? years of constant issues does your head in (and your heart) no one sees how much energy and time we put into 'getting by'
dont throw the towel in,
maybe consider the immune suppressant meds, Humira or Imuran.
I know that Nancy has had good success using Imuran with no issues on her Liver.
hope this helps
healing hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Deb,
I'm sorry that everything just keeps on keeping on. If the choice comes down to picking one of the immune system suppressants, I would point out that virtually all of the members here who are using one of the Anti-TNF drugs, (such as Embrel, Humira, etc.) have been unable to get their MC symptoms under control. Those drugs seem to work well to suppress the symptoms of most AI diseases, but I haven't seen any glowing reports from MC patients, even though they were supposedly following strict diet restrictions.
So based on that, I would have to agree with Gabes that the old standby immune system suppressant Imuran appears to have a better track record for suppressing MC symptoms than any of the other options. It doesn't seem to allow users to eat anything they choose, but with reasonable diet control, it appears to provide satisfactory control of MC symptoms, and presumably other AI issues as well.
I'm not sure what Joe is using these days, or how well it's working for his MC symptoms. As I recall, he found it necessary to switch from Imuran to another type of immune system suppressant because of his myasthenia gravis.
Whatever you decide to do, I certainly wish you the best of luck with the treatment program that you choose. When the immune system refuses to settle down, it seems to have a mind of it's own, and it can be mighty hard-headed.
Tex
I'm sorry that everything just keeps on keeping on. If the choice comes down to picking one of the immune system suppressants, I would point out that virtually all of the members here who are using one of the Anti-TNF drugs, (such as Embrel, Humira, etc.) have been unable to get their MC symptoms under control. Those drugs seem to work well to suppress the symptoms of most AI diseases, but I haven't seen any glowing reports from MC patients, even though they were supposedly following strict diet restrictions.
So based on that, I would have to agree with Gabes that the old standby immune system suppressant Imuran appears to have a better track record for suppressing MC symptoms than any of the other options. It doesn't seem to allow users to eat anything they choose, but with reasonable diet control, it appears to provide satisfactory control of MC symptoms, and presumably other AI issues as well.
I'm not sure what Joe is using these days, or how well it's working for his MC symptoms. As I recall, he found it necessary to switch from Imuran to another type of immune system suppressant because of his myasthenia gravis.
Whatever you decide to do, I certainly wish you the best of luck with the treatment program that you choose. When the immune system refuses to settle down, it seems to have a mind of it's own, and it can be mighty hard-headed.
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.
Thanks for your thoughts Gabes. I"ve been struggling trying to make up my mind with what to do. This past week has been especially rough so I made my appointment for Monday. I had hopes in the beginning that I would reign in my MC and life would go on if I put in the effort with my diet. I am leap years ahead of where I was when I started but D is still part of the routine. It's frustrating that thyroid issues stepped into the picture and now I'm thinking lupus may be a possibility. Sometimes the "why me" thoughts creep into my mind but I always think of Jean's post of "why not me?" If that doesn't work, I think of my son and that ends all pity parties on my part.
Tex, I wasn't thinking of trying an alternate drug for managing MC but to lessen the muscle and joint pain. My son just started taking azathoprine for his UC. I didn't realize that is Imuran. Would I have to stop taking entorcort? I really don't want to do that either. After my try and fail of colestipol, I had a brief scare that the entocort stopped working. It took longer for me to get back to my normal after I flared (not sure if it was bad timing or the colestipol itself). Even though it hasn't firmed up my stools, it does take care of the rumbles and night issues and I have adapted to that. I still am careful of what I eat and will never go back to just eating what I want. I recognize the foods that cause the immediate stomach aches and general yuk feeling. I continue to struggle with finding those offending foods that are not immediate. I still have the morning routine of not leaving the house until I've visited the bathroom three times. I've wake early enough so I have that time. It's a delicate balance which really is inconvenient but I have it timed to the minute. I have to eat a small breakfast at least 30 minutes before I leave for work so I can get in my last trip to the bathroom before leaving. I eat almost immediately upon waking because I have to be to work at six and have to time in when I eat in advance of taking my thyroid meds.
Not that I'm looking for more problems reading articles that state is it common for other autoimmune issues to appear after the thyroid has been removed (hashimotos) has made me start thinking. I've been focused on adding cytomel, in which I was successful at doing after what seemed like forever. But now that I've been taking it, I have not gained the relief I was looking for. Not to say that it hasn't helped but I need to reevaluate if that is where I should be placing my attention. I was thinking maybe I should try Tirosint but that is only grasping at straws. Looking further into the symptoms of lupus last night I was quite surprised at what I found. Maybe I am only grasping at straws again but I did find it interesting that I have five of the eleven criteria for lupus but some are so general that they could be MC or thyroid related. Four are required to receive the dx.
In particular I was fascinated with the malar rash. I've complained for many years about that mystery rash I get that I thought was caused by something in my garden. I've been paying more attention to the onset of the tingling that generally happens and it is always sun related. I have become extremely sensitive to the sun over the past few years and had started to wonder if maybe I was "allergic" to the sun instead of an actual plant in my yard. I did take a few pictures during a flare that I can take with to my appointment. The butterfly part always made me question if that type of rash applied to me. It is generally across my cheeks but will also encompass my whole face. Visually, you wouldn't notice the whole face coverage because it is most visible across my cheeks- bright red and throws off heat like a sunburn but twice as bad. The interesting part of the rash is benadryl stopped being effective. Now I wonder why I never went in to have it checked out but once I start wondering I realize that hate going to the doctor so I just waited for it to go away, which could be two weeks to a month.
I also have photosensitivity but didn't think much of it because I have been light sensitive since I can remember.
The mouth or nose ulcers I thought was MC related. The canker sores have improved since I change my diet but I have a tiny sore on my nostril that never seems to go away.
Nonerosive arthritis?? I'm stumped on this one. The joint pain I have right now sure seems to fit that category. The joints in my fingers are all tight, my wrists hurt and my feet are the same, and the most bothersome of late, are my knees.... I hobble when I wake up in the morning and the pains keep me up at night. I also have pain in my shoulders. Not to mention the muscle pain in my neck, shoulders, hips, and knees. I have tingling/burning in my fingertips and one nasty pain in the bottom of my foot. Similar to what I'd imagine it would feel like if a burning poker was rammed into the sole of my foot.
It also lists neurologic disorder (including psychosis).... hmmmm, possibly ?? haha
It mentions anemia but I'm not sure if it's the type I have.
I'm assuming my PCP will order blood tests to check for some other the other criteria listed. I know when I visited a rheumatologist many years ago, my labs were fine but I suppose things could change. I am so used to having "normal" labs for everything I generally get a pit in my stomach when a doctor mentions using labs for diagnostics. I almost want to blurt out- don't bother..... they will be normal!
On the list of symptoms to watch for I have: achy joints, painful joints, prolonged fatigue (started after my thyroidectomy and never improved), skin rashes, anemia, rash, sensitivity to the sun, unusual hair loss (blamed my thyroid), problems with abnormal blood clotting (not sure how abnormal is defined but I am slow to clot and minor cuts take an extremely long time to heal), pale or purple fingers from cold or stress ( I get the cold fingers often sometimes just one hand/fingers will go ice cold while the rest of me is warm- not sure if this is truly renauds or not), mouth ulcers- often painless and at roof of mouth (not sure if this is different than caner sores but those usually sting)
I don't know how much really applies to me but the knee pain has made work very uncomfortable. I walk and lift all day long. Climbing stairs makes me feel like I'm 90 years old. It's very annoying because I actually enjoy what I do. There is no option to "rest" the joints.
Tex, I wasn't thinking of trying an alternate drug for managing MC but to lessen the muscle and joint pain. My son just started taking azathoprine for his UC. I didn't realize that is Imuran. Would I have to stop taking entorcort? I really don't want to do that either. After my try and fail of colestipol, I had a brief scare that the entocort stopped working. It took longer for me to get back to my normal after I flared (not sure if it was bad timing or the colestipol itself). Even though it hasn't firmed up my stools, it does take care of the rumbles and night issues and I have adapted to that. I still am careful of what I eat and will never go back to just eating what I want. I recognize the foods that cause the immediate stomach aches and general yuk feeling. I continue to struggle with finding those offending foods that are not immediate. I still have the morning routine of not leaving the house until I've visited the bathroom three times. I've wake early enough so I have that time. It's a delicate balance which really is inconvenient but I have it timed to the minute. I have to eat a small breakfast at least 30 minutes before I leave for work so I can get in my last trip to the bathroom before leaving. I eat almost immediately upon waking because I have to be to work at six and have to time in when I eat in advance of taking my thyroid meds.
Not that I'm looking for more problems reading articles that state is it common for other autoimmune issues to appear after the thyroid has been removed (hashimotos) has made me start thinking. I've been focused on adding cytomel, in which I was successful at doing after what seemed like forever. But now that I've been taking it, I have not gained the relief I was looking for. Not to say that it hasn't helped but I need to reevaluate if that is where I should be placing my attention. I was thinking maybe I should try Tirosint but that is only grasping at straws. Looking further into the symptoms of lupus last night I was quite surprised at what I found. Maybe I am only grasping at straws again but I did find it interesting that I have five of the eleven criteria for lupus but some are so general that they could be MC or thyroid related. Four are required to receive the dx.
In particular I was fascinated with the malar rash. I've complained for many years about that mystery rash I get that I thought was caused by something in my garden. I've been paying more attention to the onset of the tingling that generally happens and it is always sun related. I have become extremely sensitive to the sun over the past few years and had started to wonder if maybe I was "allergic" to the sun instead of an actual plant in my yard. I did take a few pictures during a flare that I can take with to my appointment. The butterfly part always made me question if that type of rash applied to me. It is generally across my cheeks but will also encompass my whole face. Visually, you wouldn't notice the whole face coverage because it is most visible across my cheeks- bright red and throws off heat like a sunburn but twice as bad. The interesting part of the rash is benadryl stopped being effective. Now I wonder why I never went in to have it checked out but once I start wondering I realize that hate going to the doctor so I just waited for it to go away, which could be two weeks to a month.
I also have photosensitivity but didn't think much of it because I have been light sensitive since I can remember.
The mouth or nose ulcers I thought was MC related. The canker sores have improved since I change my diet but I have a tiny sore on my nostril that never seems to go away.
Nonerosive arthritis?? I'm stumped on this one. The joint pain I have right now sure seems to fit that category. The joints in my fingers are all tight, my wrists hurt and my feet are the same, and the most bothersome of late, are my knees.... I hobble when I wake up in the morning and the pains keep me up at night. I also have pain in my shoulders. Not to mention the muscle pain in my neck, shoulders, hips, and knees. I have tingling/burning in my fingertips and one nasty pain in the bottom of my foot. Similar to what I'd imagine it would feel like if a burning poker was rammed into the sole of my foot.
It also lists neurologic disorder (including psychosis).... hmmmm, possibly ?? haha
It mentions anemia but I'm not sure if it's the type I have.
I'm assuming my PCP will order blood tests to check for some other the other criteria listed. I know when I visited a rheumatologist many years ago, my labs were fine but I suppose things could change. I am so used to having "normal" labs for everything I generally get a pit in my stomach when a doctor mentions using labs for diagnostics. I almost want to blurt out- don't bother..... they will be normal!
On the list of symptoms to watch for I have: achy joints, painful joints, prolonged fatigue (started after my thyroidectomy and never improved), skin rashes, anemia, rash, sensitivity to the sun, unusual hair loss (blamed my thyroid), problems with abnormal blood clotting (not sure how abnormal is defined but I am slow to clot and minor cuts take an extremely long time to heal), pale or purple fingers from cold or stress ( I get the cold fingers often sometimes just one hand/fingers will go ice cold while the rest of me is warm- not sure if this is truly renauds or not), mouth ulcers- often painless and at roof of mouth (not sure if this is different than caner sores but those usually sting)
I don't know how much really applies to me but the knee pain has made work very uncomfortable. I walk and lift all day long. Climbing stairs makes me feel like I'm 90 years old. It's very annoying because I actually enjoy what I do. There is no option to "rest" the joints.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
-
louis
From my 12 years expierience with autoimmunie issue, which is more then half of my life, i can only tell you that medications never helped in the long run, atleast for me. Actually, it always made everything worse for me.
I think its not really important to think about a certain name for the issues you have, whats important is that you seem to have alot of inflammation going on and your body is still attacking itself. But i dont think you will
find a doctor or specialist of any kind who can solve this for you, because you are the one that knows yourself best.
In your situation i would try to listen to your body as much as possible. What does your diet look like right now? Are you certain, that everything you eat right now is really tolerated by your body. The diet suggested here in the forum is good for many people, but everybody is different and has to find the right path for themself. I dont have any problems to digest fruit, salat or vegetables for example. But meat like turkey and rabbit makes my psoriasis much worse in a matter of hours. There are people who solve there autoimmune issues with going full raw vegan, and there are people who solve it with autoimmune paleo. At the same time there are people failing with one or the other.
If you are not underweight, maybe try some water or juice fasting and see if you get better. Thats what i would try.
I dont want to stop you from using medications, but just from my expierience it almost never ends well. Good luck.
I think its not really important to think about a certain name for the issues you have, whats important is that you seem to have alot of inflammation going on and your body is still attacking itself. But i dont think you will
find a doctor or specialist of any kind who can solve this for you, because you are the one that knows yourself best.
In your situation i would try to listen to your body as much as possible. What does your diet look like right now? Are you certain, that everything you eat right now is really tolerated by your body. The diet suggested here in the forum is good for many people, but everybody is different and has to find the right path for themself. I dont have any problems to digest fruit, salat or vegetables for example. But meat like turkey and rabbit makes my psoriasis much worse in a matter of hours. There are people who solve there autoimmune issues with going full raw vegan, and there are people who solve it with autoimmune paleo. At the same time there are people failing with one or the other.
If you are not underweight, maybe try some water or juice fasting and see if you get better. Thats what i would try.
I dont want to stop you from using medications, but just from my expierience it almost never ends well. Good luck.
Deb,
What Louis says makes a lot of sense because no doctor is likely to be able to understand enough about all the complexities of what is happening in your body to be able to formulate a treatment that will help to resolve the issues without making other issues worse. He is right on target when he points out that you have a system-wide inflammation problem. You apparently do have SLE.
That said, have you given any serious thought to LDN? LDN can be used for pain management. The article at the link below is somewhat long, but it sheds some light on this issue.
The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
To address your question about Entocort, as far as I'm aware there are no adverse interactions between azathioprine and budesonide. It might be redundant to take them concurrently, but there shouldn't be any adverse consequences due to the combination.
Tex
What Louis says makes a lot of sense because no doctor is likely to be able to understand enough about all the complexities of what is happening in your body to be able to formulate a treatment that will help to resolve the issues without making other issues worse. He is right on target when he points out that you have a system-wide inflammation problem. You apparently do have SLE.
That said, have you given any serious thought to LDN? LDN can be used for pain management. The article at the link below is somewhat long, but it sheds some light on this issue.
The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
To address your question about Entocort, as far as I'm aware there are no adverse interactions between azathioprine and budesonide. It might be redundant to take them concurrently, but there shouldn't be any adverse consequences due to the combination.
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.
Thanks for your suggestion Louis. I have been GF, DF, SF, and EF for almost four years now and had hoped I would have better control over my MC at this point. Am I sure I have eliminated all of my sensitvities? No, not at all because I still have D even though I have eliminated my four biggest triggers per my enterolab results. I continue to attempt to figure it out but not as diligently as I should. The only way now would be to give up basically everything and start from there but I'm not ready to do that. A while back I ate only rice and pork for breakfast, lunch, and dinner for a week straight and did not see one glimmer of improvement. It's likely one week was not enough time (or the rice or pork is an issue) but I simply could not do it anymore.
I've had MC since 2007 and found this site in 2011. That was an incredibly long time for my MC to run wild. I lost trust in my GIs so and stopped all meds so my MC spiraled into a very serious condition. I often wonder if that's sparked my Hashimoto's and everything has gone downhill from there as far as autoimmune issues are concerned. The advice given here has been golden and without it I would be far worse than I am now, so for that, I am thankful.
If you haven't read some of my previous posts.... my son has been an incredible learning experience for me. He was dx with primary sclerosing cholangitis when he was 16. He is now 20 and has added UC and autoimmune hepatitis to his health concerns. It is devastating to watch him go through this and right now, you would never know he has issues by looking at him. The worse is yet to come and there is no timetable. It could spiral in an instant or he could go on for years taking his cocktail of meds to prolong it. It's really a crapshoot. He is in his junior year in college right now studying to be a social worker with the plan of going into child protective services. He currently takes rifampin, ursodiol. prednisone, lialda, and azathioprine. It scares the hell out of me because I don't have the understanding to know if these are all ok. I had a terrible experience with prednisone and did everything I could to convince his GI team to use something else but they told me it was the best course of treatment for him at this time. I had no other choice to put my faith in them because I have to and I could not place his health in danger because of my bad experience. I don't have the medical background. It has done it's job and his liver panel has improved tremendously- I know it could come at a price but that's the bad thing about it. Despite his condition he lives his life to the fullest and is one happy kid right now. It brings my own issues into perspective and also makes me realize I may not be able to continue avoiding meds at all costs. Right now it is just too painful to continue the way I am.
I don't believe diet alone is the cause of what I am experiencing but will not give up on the trial and error with foods I eat. It's frustrating because what I eat now is all "healthy" but as we all know, that doesn't necessarily matter. My diet primarily consists of meat and vegetables. I am still careful with the amount of fruit I eat. Rice is a staple and I eat some nuts (which is debatable). I dabble with legumes and tomatoes on occasion (which is also debatable). Other than that, I have a pretty MC friendly diet. I don't want to totally give up but I may find more peace if I simply accept that I have multiple autoimmune issues that I will need help in managing because I cannot do it on my own. Thinking back to my MC that ran a-muck.... I don't want to create bigger issues because I do nothing now. I'm not sure if I'm on track or not. Over the past couple months the pains that would appear and go away only to be replaced by something else have now all happened at the same time and continue without end. I have a pretty high pain tolerance but I have reached my breaking point.
Tex, Thank you for the link. It was very informative and I will start out with asking to go in that direction first. If LDN is just in its infancy for treating pain, what are the chances of my PCP being unfamiliar with it? Of course you can't answer that but if she is unwilling, what would be the next best option? I know she will need to do labs first but if I don't meet the criteria for lupus (not that I want to) then it may be back to the fibromyalgia dx that was tossed around years ago. Although, the pains I had then when it was originally brought up as a possibility are not the same as what I am experiencing now. Although, like Louis said- the name may not matter. In the back of my head, I am trying to prepare for the worst case visit scenario. I have no firm idea of what is the best drug for what I am experiencing so I appreciate your suggestions. At least I have something to start the conversation with.
I've had MC since 2007 and found this site in 2011. That was an incredibly long time for my MC to run wild. I lost trust in my GIs so and stopped all meds so my MC spiraled into a very serious condition. I often wonder if that's sparked my Hashimoto's and everything has gone downhill from there as far as autoimmune issues are concerned. The advice given here has been golden and without it I would be far worse than I am now, so for that, I am thankful.
If you haven't read some of my previous posts.... my son has been an incredible learning experience for me. He was dx with primary sclerosing cholangitis when he was 16. He is now 20 and has added UC and autoimmune hepatitis to his health concerns. It is devastating to watch him go through this and right now, you would never know he has issues by looking at him. The worse is yet to come and there is no timetable. It could spiral in an instant or he could go on for years taking his cocktail of meds to prolong it. It's really a crapshoot. He is in his junior year in college right now studying to be a social worker with the plan of going into child protective services. He currently takes rifampin, ursodiol. prednisone, lialda, and azathioprine. It scares the hell out of me because I don't have the understanding to know if these are all ok. I had a terrible experience with prednisone and did everything I could to convince his GI team to use something else but they told me it was the best course of treatment for him at this time. I had no other choice to put my faith in them because I have to and I could not place his health in danger because of my bad experience. I don't have the medical background. It has done it's job and his liver panel has improved tremendously- I know it could come at a price but that's the bad thing about it. Despite his condition he lives his life to the fullest and is one happy kid right now. It brings my own issues into perspective and also makes me realize I may not be able to continue avoiding meds at all costs. Right now it is just too painful to continue the way I am.
I don't believe diet alone is the cause of what I am experiencing but will not give up on the trial and error with foods I eat. It's frustrating because what I eat now is all "healthy" but as we all know, that doesn't necessarily matter. My diet primarily consists of meat and vegetables. I am still careful with the amount of fruit I eat. Rice is a staple and I eat some nuts (which is debatable). I dabble with legumes and tomatoes on occasion (which is also debatable). Other than that, I have a pretty MC friendly diet. I don't want to totally give up but I may find more peace if I simply accept that I have multiple autoimmune issues that I will need help in managing because I cannot do it on my own. Thinking back to my MC that ran a-muck.... I don't want to create bigger issues because I do nothing now. I'm not sure if I'm on track or not. Over the past couple months the pains that would appear and go away only to be replaced by something else have now all happened at the same time and continue without end. I have a pretty high pain tolerance but I have reached my breaking point.
Tex, Thank you for the link. It was very informative and I will start out with asking to go in that direction first. If LDN is just in its infancy for treating pain, what are the chances of my PCP being unfamiliar with it? Of course you can't answer that but if she is unwilling, what would be the next best option? I know she will need to do labs first but if I don't meet the criteria for lupus (not that I want to) then it may be back to the fibromyalgia dx that was tossed around years ago. Although, the pains I had then when it was originally brought up as a possibility are not the same as what I am experiencing now. Although, like Louis said- the name may not matter. In the back of my head, I am trying to prepare for the worst case visit scenario. I have no firm idea of what is the best drug for what I am experiencing so I appreciate your suggestions. At least I have something to start the conversation with.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease