Burning Skin - Help!!

Information about how to manage or reduce the severity of BFS symptoms

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Burning Skin - Help!!

Postby muppetdog on August 4th, 2013, 2:13 pm

For the past few days I have had both my legs up to my, and including, my butt burn. It feels like I have rolled around in a bunch of hay, or am wearing burlap or have some sort of sunburn. I have had a couple nights where this wakes me up. I have had to sleep without any pants because they seem to aggravate this sensation. It sometimes spreads to my back and arms. Also, it tends to stop burning and start itching. I know those sensations are closely related, but it's so strange.

Last night I slept for 45min before this woke me up and then I was not able to get back to sleep till 730am till 1200pm. I tried taking a Claritin, 1.5g of Tylenol (because of the pain), and some extra Lunesta and finally got back to sleep. This has got me pretty worried. It's pretty detrimental to living a normal life.

I have been analyzing what I have been eating to see if I can track it to some sort of allergic reaction. I have washed my bedding and before in Tide-Free because I thought it might be some sore to contact dermatitis, but I am not sure that's it. I have had Dr tell me before, that when you have itching like that, it is most likely from something internal.

I have had this before but never this bad. I have been twitching for 21months not so I really don't know when all this sensory/nerve/parathisia/nuropathy type stuff will go away. I just seems to keep coming back. Da*m it.!!

Ok, so here's the question. Has anyone had this? How did you get it to go away? Please don't give me the "classic" line ;), I'm not anxious, I'm *beep* :)

Any info on strategies to finding out why this happens or making it go away would be great.

Thanks in advance, you guys.

MD
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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 4th, 2013, 6:44 pm

It really does sound like an allergic reaction. I'm glad you washed your bedding and I'm assuming you also washed your clothing in chemical free detergent. That would have been my first suggestion. Is there a time of day that it seems worse? Can you correlate it to any activity that you do regularly? My wife had a reaction to the salt in our water from the water softener. Some people develop allergies to types of material or fabric, so look to see what your pants have in them that you shirts don't maybe.

If it's not an allergy it could be a hormone imbalance. Are you using any personal care products that might have hormones in them? Rogaine for hair, cologne/perfumes, or even shampoos or soaps with lavender (sometimes the body reacts to lavender as though it were a hormone) might be some potentials to look into. The problem doesn't always present itself where it would be obvious, so don't think something you put on your face can't be causing symptoms on your legs.
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Re: Burning Skin - Help!!

Postby mwagner on August 4th, 2013, 8:15 pm

It has definitely happened to me. Not recently, but in the past (pre-twitching). I had all sorts of weird symptoms during that time of my life, including this sunburn type of skin discomfort (like lots of mouth sores, occasional hives breakout, legs being in pain at night, etc.). I told all my doctors about it, and everyone kept saying "you're stressed".

I attributed it all to stress and it has since gone and rarely returned (although I'm even more stressed nowadays). It's a strange feeling for sure.

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Re: Burning Skin - Help!!

Postby Yuliasir on August 4th, 2013, 10:20 pm

I can say that here in the fellow cohort urticaria is not unfrequent and probably it is a case (especially if you had blisters).

I feel quite a bit of fun becasue 3 years ago when I had my first bout, my gyno had seen my butts (sorru guys but this is a life) covered with 15 millimeters dianeter blisters and also suggested that I need to change my laundry stuff.

I would admit I did not becasue as a chemical engineer I know that probably the only 'non-detergent' washing substance could be a washing clay :) and I would like to say my own adverese skin reaction depends rather on the fact if I had some strong stress before or not. At my first bout I had it. It dissipated in about a 3 month without any action on my side.

Last one stress I had (quite significant) cost me right now about a 2 month of intermittent and sometimes severe itching, sometimes seemingly related to what I eat (tomatoes, chocolate) sometimes not (especially if it appears early in the morning in the soles of my feet).

As I had admit recently, it is a bit funny that we are rather standard and 'forecastable' in our reactions - some fellows always blame allergy due to chemical load, I almost always see connection to the stress... anyway, I think stress and allergic reactions are interrelated (I know this by my family history and by the storeis of other people who had food allergy in the sterssful period of life and then upon relaxing ceased to be allergic). I also can say one but may take few months slowly dissipating. Just be ready that it could be for rather long time.
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Re: Burning Skin - Help!!

Postby muppetdog on August 9th, 2013, 5:34 pm

Hey folks

Thanks for the replays. the sunburn nerve pain thing seems to wax and wane lately for me. Some days I don't have it, some days it wakes me up in the middle of the night. I just think my nerves are fried, but its good it is not constant. It sucks because, a lot of people say they get the nerve stuff early in their ordeal and then it dies down; but for me I have been going through this for 21 months with the sunburn thing coming and going off and on.

I know its not hives, I can get those by running through a bunch of weeds or letting a cat scratch me or something. I read a post on another site by some lady that said she gets the sunburn prickly Icy Hot thing after eating chocolate. Its probably something I have been eating that I don't suspect like you said SAM. I will have to look back through my food log and nail it down.

Or it just might be that my nerves are fried:). French fried. I hate that my body seems to over respond to the littlest things. I look forward to the day when it settles down.

Any way, Thanks again. I live on

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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 9th, 2013, 6:41 pm

If it is an allergy to something just know that new allergies are just another symptom. Early on when I discovered my sensitivities to foods, chemicals, and other things I thought that the allergies were the cause of my BFS. In actuality they were symptoms too. The problem with allergies though is that they bring about reactions that are symptoms on their own. It's a compounding effect of misery. Our bodies develop allergies, sensitivities, and intolerances in response to other things that are going on. In the case of BFS, they just make the BFS symptoms that much worse. Getting rid of the allergies or the inflammatory foods won't cure BFS though because like I said, they are actually just symptoms themselves. Good luck finding your trigger.
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Re: Burning Skin - Help!!

Postby muppetdog on August 9th, 2013, 6:51 pm

SAM - So if allergies and sensitivities are just symptoms, did your neuro symptoms just go away by themselves? I thought you got rid of them through modulating your foods. I am a bit confused, it seems like a whole bunch of circular thinking.

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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 9th, 2013, 7:25 pm

Your confusion is understandable. It took me a long time to figure out how everything tied together for me. If you go back and read my posts from 2010 you'll see that I truly did think back then that allergies were the source of my BFS. The problem with that was though, what on Earth caused me to develop a rash of new allergies? This is why I talk about Leaky Gut Syndrome in my posts. The allergies were just a symptom of a gastro-intestinal condition I had developed. In my case, I believe the neurological problems I had were also resultant of Leaky Gut Syndrome, just like the allergies. You see, eliminating the allergens didn't stop the twitching, although it did greatly reduce it.

In my particular case BFS manifested because of a gastro-intestinal condition (LGS) that was causing incredible stress to my nervous system. The gut and the brain are very connected. That does not mean that every BFS case is because of this LGS though. I think BFS can result from other forms of stress to the nervous system. I'd suspect that people who develop a rash of new allergies are likely to be suffering from LGS, just because of the strong connection the immune system has to the gut. It is incredibly complicated and seems circular. For example, as a symptom of my sensitivity to gluten I had incredible anxiety. When I would accidentally eat gluten my heart rate would sky rocket and my mind would race. It was like I was on an adrenaline rush. So this anxiety induced by a symptom caused me to panic and freak out only causing me more stress. It was a downward spiral. As important as it is to overcome anxiety and fear, I believe it was physically impossible for me to do this without modifying my diet. Anxiety itself was a symptom of my gluten problem, which was a symptom of LGS, which was a symptom of something else, and so on. Everything happens in nature because balance is constantly being sought. For every action there is a reaction. My LGS was caused by my lifestyle, attitude, diet, and many other factors.

In order to reverse the damage being done you must systematically evaluate your lifestyle for things that are not serving your greater health and change them for the better. Diet alone won't do it. Exercise alone won't do it. I would say the most important factor would be attitude, but in many cases even this alone won't do it. It really depends on each individual case because we are all different. But in any case, to get to your original question... Allergies are always developed by the body because it is responding to something that it is interpreting as a threat. In some cases it is an appropriate immune response, like poison ivy. In many cases it is not a proper immune response, like gluten, dairy, and other foods. It is really just your body's attempt to seek balance because of some irritation or inflammation that it perceives as a threat. You can recover from allergies with the proper help. I am now able to eat gluten, dairy, and many other foods I once had to avoid.

I hope this helps explain a little better. Let me know if you have any more questions.
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Re: Burning Skin - Help!!

Postby muppetdog on August 9th, 2013, 7:39 pm

Yeah, thanks for the info. My biggest problem is trying to deal with the inevitable oddball symptoms and fatigue that seem to stem from nothing. Is it some stressor that I am not perceiving, is it some hidden food source? Is it this, is it that? Its pretty mind numbing and life changing. I wish I could ignore a lot of what goes on with me, but it has effected me to the point of not being able to live a normal life at times. It sucks when you get woken up in the middle of the night and have to slam a bunch of Tylenol because your feet, lower legs, and hands feel like they have Icy Hot all over them. Its hard to function when you have fatigue so bad you can't leave the house. Who knows, maybe it will get better, but for now I live on, but might be losing this battle ;) Maybe year three I will find the right foods, or the right attitude.

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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 9th, 2013, 9:03 pm

I know your conundrum, believe me. I was woken up in the middle of the night with random full blown panic attacks for no good reason. I would go to sleep (usually after much tossing and turning), sleep soundly for a few hours, then suddenly wake up at 2 or 3 in the morning in a full night-sweat, heart pounding, and I would shake violently like I was shivering from being cold, even though I would be perfectly comfortable with the temperature. My teeth would even chatter it was so bad. I had a magnesium powder that I would mix with some water and down with a few Valerian root capsules to calm down again. It was pure hell. I remember one night I woke up and I was so disoriented with brain fog that I did not know where I was or even who I was. I just started to freak because everything was unfamiliar to me. I didn't even know what state I lived in. It was probably a good minute or two before everything started to come back to me. I was a basket case...

That was all right before I decided to swallow my pride and give alternative medicine a shot. I still remember my first appointment. I was questioning why I was even humoring those quacks. I felt stupid. They went through my paperwork, my story, checked me out like most doctors do, and then proceeded to suggest I might want to try looking into my diet. I remember thinking 'what in the heck would diet have to do with neurological symptoms?' They did a few more things but I remember that I pretty much wrote it off after the diet conversation. I remember leaving thinking I had just wasted my time and money. The conversation planted a seed though.

I remember that night we got pizza for dinner. It was a gluten and dairy smorgasbord. That night also wound up being one of my worst nights yet. The next morning I decided that I was going to give the diet suggestion a try in light of the experience I had the night before. If you've seen my blood test results I had shared, you'd see that my gluten and wheat allergy was almost off the scale. It's no wonder that I started to feel dramatically better after a few days of being gluten free. The twitching remained but all the stuff that was really starting to scare me had stopped. The night sweats, panic attacks, incredible adrenaline rush style anxiety, the brain fog, ratcheted muscle movement, etc. Basically all I was left with was the twitching once I cut gluten out. I realize though that everyone is different. Not everyone will have the same trigger foods, and not everyone will even be triggered by foods period. In my case though my gluten allergy was one of my worst symptoms and it caused other symptoms.

So where am I going with all this? I'd recommend finding an alternative medicine doc, muppetdog. If not for the care of my alternative medicine docs, I don't think I could have recovered. They helped me to find out what my triggers were. They helped me to find out what was causing my allergies in the first place. They helped treat me for that condition and then they helped me figure out the other things that were out of balance with me and address those too. There are techniques and tools employed by alternative medicine docs that most people just do not understand and therefore write off as quackery. In many cases it is not though. There are answers out there, but you won't find them on a prescription pad. Get the right kind of help and you'll be making progress in no time. On your own, you'll likely continue to spin your wheels...
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Re: Burning Skin - Help!!

Postby muppetdog on August 10th, 2013, 2:35 pm

Thanks SAM,

Yeah, I will probably eventually find a good natural doctor but I am still kind of in the process of ruling things out with some other Dr. I guess I am going through the motions. Besides, there are a lot of ND nuts here in CO and I need one that at least has some grasp on science. I can't make myself believe in strange unproven treatments. I keep thinking there is something REAL that the main-streamers Dr's are missing. I know that the University of Colorado has an Integrative Medicine program at the teaching hospital, I might check that out.

I saw a Lyme literate MD a while back and she thought I could have Lyme but I don't know where the heck I would have gotten it. Yeah, I got bit by ticks back when I lived in MO 15 years ago, but I think it would have shown up by now. Besides, Lyme people are nuts :) I'm not sure that if anyone with our symptoms were to go to a LLMD, that they would just say you have Lyme.

I probably am going to have to go back to a neurologist. This nerve pain I have been getting seems to be getting worse. I am sure its nothing crazy because I have had this crap for so long, but who knows.

Last night, I went to bed and 30min later I was up with super painful Icy Hot nerve pain in my feet, shins, all the way up to my butt and hands and forearms - pretty much par for the course for weeks. I can't get any sleep lately, the burning is just too intense. I might have to cave and hit the nerve stuff that neros keep pushing, although I preach against them so much. I guess I would rather be an addict then not be able to sleep with pain. I can't work anyway so I guess why not just zombie out on some nerve drugs.

I am so p1ssed off today. At some point you just can't take anymore. nerve pain, fatigue, buzzing, weird sensations, lack of sleep. Going on neuro drugs equals the end of my career but at this point I am backed up against a wall. I was doing so well for 6 weeks, running working out again then bam! fatigue, nerve pain, crazy stuff, feel sick. I can't believe I can take a turn for the worst this quick.

Ok, I have to vent. thanks again everyone for the advice.

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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 10th, 2013, 4:12 pm

muppetdog wrote:Yeah, I will probably eventually find a good natural doctor but I am still kind of in the process of ruling things out with some other Dr. I guess I am going through the motions. Besides, there are a lot of ND nuts here in CO and I need one that at least has some grasp on science. I can't make myself believe in strange unproven treatments. I keep thinking there is something REAL that the main-streamers Dr's are missing. I know that the University of Colorado has an Integrative Medicine program at the teaching hospital, I might check that out.


This is the preconception that I had to get over in order to get to where I am today. It is an assumption that many make (including myself originally) that the seemingly 'strange' treatments were unproven or not having a 'grasp on science'. In fact, what I found was much to the contrary. Yes, some of the techniques seemed strange at first, but after proceeding with an open mind and looking more into them I actually found that some of the alternative practices have more of a grasp on science than mainstream medicine. Unfortunately it seems that mainstream medicine only focuses on the pharmaceutical approach to medicine and IGNORES more natural methods that do work but are un-patentable, and therefore not profitable. Take allergy elimination techniques such as NAET (Nabudripad's Allergy Elimination Technique http://www.naet.com) for example. NAET utilizes the acupuncture system to deprogram the body from interpreting an allergen as a threat. It is natural, safe, and permanent. If you check out the website you'll see that there are doctors trained in the technique all over the world. Have you ever heard of it though? Do you see TV commercials for it? I hadn't ever heard of it before, and I had horrible hay fever for most of my life. We see plenty of allergy medication commercials though. 24 hour relief, non-drowsy, take as recommended by your doctor... Depend on us and pay us continuously forever is the result of going the pharmaceutical route. Acupuncture can't be patented. Use NAET to eliminate an allergy to something and it's gone for good. No pills, no prescriptions, no relying on continuous renewal appointments. There's no money in it compared to pharmaceuticals. It gets no press and gets labeled as quackery. It works though. This type of medicine is why I can eat foods that I was once so sensitive to. Again, in my blood test my antibody response to wheat and gluten was off the charts and now I eat it again just fine. The techniques only seem strange because they are so unfamiliar. Do not underestimate the science behind them though.
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Re: Burning Skin - Help!!

Postby muppetdog on August 10th, 2013, 4:51 pm

SAM - I will give the site a better reading over, but its hard to get behind something when you go to the site and it right of the bat has something saying "cure autism with NAET" :). I am a major septic, like you said, about this stuff. I just feel like I am wasting my time considering the "hokey" stuff. It's also expensive. I just think so scientifically.

I'm a bit septic on anything chiropractic also. The guy that invented that seems to be a chiropractor. I have been to a couple, with little help. Then, After reading about the origins of the chiropractic discipline, I just think they can make up whatever they want and believe it works. It's as far-out there as Scientology when you read about it.I think they do a lot of wading in the placebo effect pool, and it works sometimes and they call it cure.

Don't punch me in the face but, did you ever consider that what you had was transitory and somewhat acute and by doing all this holistic stuff you just used the placebo effect long enough for it to work it's self out? Not to offend in anyway. I just see so many on this board that NEVER get better and then the few that do that seem to suffer short term (year or so) and then it just kind of goes away no mater what they do. (I am of course talking more about the paresthesia, neuropathy, pain, sleep problem, nervy type stuff. The twitching seems to be pretty hard to kick.) Could this have happened to you?

Again, not to insult, just what I am thinking. I probably will have to try something different at some point :)

Thanks again.
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Re: Burning Skin - Help!!

Postby SecretAgentMan on August 10th, 2013, 8:01 pm

No offense taken muppetdog. I'm an engineer and over analyze everything. I actually think that my tendency to over analyze just about any situation is partly what lead me down the path to manifesting BFS in the first place. Have I considered that my recovery was due to the placebo affect? Absolutely. This may sound odd, but I actually attribute some of the credit for my recovery to the mechanics behind what drives the placebo affect. I can go into more detail on this later. Was it the sole purpose of my recovery? My engineering background and analytic evaluation of my experience say 'no.' You see, I dove into the details of some of the odd or strange practices and actually did a lot of research into why and how it works. I validated the results and made sure I understood how some of these things were possible. I was not disappointed either.

So I'll elaborate a little more on why I attribute some of the credit for my recovery to the mechanics behind what drives the placebo affect. What is the placebo affect? In modern medicine they use it as a term to dismiss results that can not be attributed to anything more than positive thinking on the part of the patient. This is the age old saying 'mind over matter.' One of the reasons I continually bring up recommendations to people on self hypnosis or meditation is because I now understand more about the nature of 'mind over matter' and why it has such a powerful influence over our physical health. In a way, the anxiety and fear people have on this board which contributes to the worsening of people's symptoms is sort of the placebo affect in reverse. You think all these negative thoughts and bring about your worst fears and low and behold look at the physical toll it takes on the physical body. I believe mind over matter has incredible influence over our physical health both for the positive or negative depending on how you use it. So why not use it for your benefit? Easier said than done though right?

I don't see it as a coincidence that when I started to see positive results with the alternative path that my attitude improved, I finally had hope, and my downward spiral reversed into an upward spiral. However, I also believe that the physical world has rules that it is governed by. I think every fire starts with a spark, but in order to ignite the fire you need a physical spark. Thinking positive thoughts all day long won't get that fire going. My body was in real need of physical help. The right people and the right tools were required to get things going and address those physical needs. I believe the positive attitude and thoughts provide the momentum and pave the road ahead, but you still require the right physical actions to carry through. The wrong physical actions will hurt you just as equally. Does this make sense?

I know you say you are skeptical and that is fine, just make sure that you don't mistake skepticism for a closed mind. Skepticism can be healthy. We can't just believe everything we read, see, or hear. On the other hand, if we close our minds to new possibilities just because it does not fit into our current belief structure, we will never expand and learn new things. An avenue to a beautiful outcome may never come to fruition if it's means are discounted before they are ever given a fair chance. This can be tricky because depending on the belief that is being challenged, the very foundation of our understanding of how things work can come into question. People instinctively react in fear to this. Having an open mind does not mean that you have to believe everything. It simply means that you never discount a possibility no matter how unlikely it seems or how much you do not want to believe it is true. Simply acknowledge that it is a possibility. Naturally we will have our preferences for how we believe things work, but maintaining an openness to new information to sway you will do wonders for those future potentials working out in your favor. I'm not accusing you of being closed minded. I'm just laying out the logic and rationale for an open mind and the benefits it brings.

That all being said, I had some major hurdles to overcome in my journey that transformed me over the course of my treatment and recovery. I really didn't have anyone coaching me in mindset along the way so I sort of arrived at this in my own way. I was skeptical of all this when I first started out. I would reference the story of my first appointment in my earlier post to illustrate this. When I began to get validations of their recommendations working, I opened my mind a little more. When I began to get validations for some of the treatments and supplements I opened my mind a little more again still. I needed the gradual immersion into it all in order to take each additional step forward. The more I learned about the science behind it the more I realized why it was working so well.

So, do what you will with this information. I realize we all must walk our own path. Everyone is on their own path for a reason. If passing on my experience can help others I am happy to do so. If others do not find that anything I say resonates with them then that is fine too. I like to raise awareness at the tools that helped me achieve a full recovery because I believe that with them many more can achieve it too. Not all are on that path though, and there is nothing wrong with that. I'm happy to talk more about this anytime. Hopefully what I did say here made sense.
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Re: Burning Skin - Help!!

Postby muppetdog on August 11th, 2013, 11:57 am

SAM - I can totally see your point of view and it is reassuring that you did so much research on the treatments you did. I will keep and open mind.

I guess being and engineer equals twitching. It seems like half the people on this board are engineers.
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Re: Burning Skin - Help!!

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