New and scared

At least I think I am new... in the process of diagnosis. I have been diagosed with MS, IIH. Those were retracted. I have a history of a pituitary micro adenoma, now have empty sella. I have chiaris malformation I. I started lactating 15 years ago without pregnancy or elevated prolactin. I am super hyper mobile... always have been. My feet have always swollen and become red, my hands started doing the same about 10 years ago. I have papiledema in my left eye.

Three years ago I gave birth to a lovely baby girl. Since that time everything escalated and became so much worse. I am quite scared at the prospect of not being able to play with my daughter, and becoming a burden to my husband.

I know I am rambling and I feel like I am vomiting all of this information into this. I apologize for that. Just hopeful and horrified that this may be an answer for me. I am attaching a picture of today's feet after being down for 5 min :(

Please let me know what you think... 20140721_175759.jpg

Has anyone had this combination of symptoms?

Hi Emma,
I am really sorry that everything has become so much worse since your little girl was born. Do you mean with regard to the EM or generally with your other conditions too? Those first few years with a new baby are very hard and tiring. Do you think symptoms are still getting worse or have they plateaued? It isn’t easy keeping up with a small child at the best of times but I am sure it is very rewarding!
Don’t be horrified. I was very low in the early days when I read online about people housebound and in permanent terrible pain with short life expectancy. There is no reason to think you are one of the unfortunate, but rare, few who suffer so badly and there are medications which may help. You are in the right place to find out ways to help.

I am so sorry Emma. It is normal to be afraid at first. So much is happening and often doctors can't even explain why. I was terrified as new and terrible things started happening with my body. Every time something new happened that was severe I was off to the ER where yet again they don't know why and couldn't help.My primary care started worrying about my mental state because of all of the ER visits. I didn't go every time I had symptoms only when new and scary ones happened. For me they all happened in a short time. They believe now I have some sort of connective tissue disorder too which just compounded everything.

It has now been 5 years since symptoms presented and 3 since diagnosis. I have settled into a life where I have learned to live and manage this to a degree. I am one of the unfortunate ones that haven't found a med that helps yet but I am still trying. I know a great many EM sufferers have found things that have helped and are leading a relativity normalish life. Yes I know that isn't a word! HA! I have never heard of any one having a shorter life span due to this. At first as symptoms presented they were so bad I thought I was dying hence the ER visits. Now I know What ever is happening to me isn't going to kill me as I am sure it would have already.

Could your symptoms be worse due to the extra activity of raising a child? I know mine get a lot worse with activity of any sort. I know it is hard on the family but with some preparation I have found it extremely helpful to lower the temp in the house. I know this is hard with a small child but with preparation such as dressing them warmer and raising the temp just when bathing your child could be of some help in your daily life.

Please don't be afraid. I know easier said than done. You will find a lot of helpful info here both in treatment options and lifestyle help to make this easier for you and your family.

I wish you all the best. I hope to speak with you soon.

Take care,


Hi Emma,

How awful to be dealing with all of those health issues when you have a new baby! It must be overwhelming for you at times. As Alina mentioned, it is helpful to have the temperature of the house kept lower. I like to have a fan blowing on my feet when my EM is flaring. I have noticed that my EM symptoms were reduced when my neurologist increased my dose of Lyrica recently.

With regards to my other symptoms, I have not had the same cluster of symptoms and illnesses that you have, but there are similarities, in that MS is an autoimmune disease. I have been diagnosed with Lupus, RA, autoimmune hepatitis, Hashimoto's thyroiditis, psoriasis, diabetes and celiac disease, all of which are autoimmune diseases. Also I have fibromyalgia and four tick-borne illnesses, including Lyme disease. In fact Lyme disease likely triggered many of my other issues.

I was diagnosed with Raynaud's syndrome around the same time I was diagnosed with lupus. Raynaud's is similar to EM in that it is a neurovascular disease but the symptoms are the opposite of EM: typically one's hands and feet turn blue and instead of a sensation of heat, they feel like they are freezing, even when the temperature is quite warm and comfortable. The Raynaud's came first, then the EM began a couple of years later. In fact, I have actually had BOTH Raynaud's and EM active at the same time, on the same foot: three of my toes were blue and two were red. That was definitely scary, so I can relate to your fears!

I do hope that your doctors are sympathetic and open-minded and that they LISTEN to you with regards to all of your symptoms and concerns. This has been the most important thing in my experience, that is having the right doctors, either those with the expertise to deal with your unusual issues, or alternatively, having one or more of your doctors who are willing to learn and to try new things.

Best wishes,


Hi Emma so sorry to hear what a difficult time you are having . I was diagnosed 12yrs ago after a nightmare 3mnths of agony when none of the medics could give me a diagnosis ,.its very scary however There

Are good medications it means trying them out and no two people have exactly the same results I live a reasonably normal life but take 3000mgs of gabapentin a day . Its a high dose but i built it up slowley untill the pain was under control
.at first i also took diazipam to help with the anxiety as bieng stressed made symtoms seem worse Do make sure you stand up for yourself with the medics u are the expert in your own condition . In many cases the proper combination of meds settles things down and i now have days when i am able to forget about the EM altogether you will i hope be able to live your life and not your illness best wishes Annette

A gentle soft ((( Hug ))) Emma. I am so very sorry you are going through so much. Although, I do not have EM, MS, IIH, and so forth I have come to understand that this website and the 'sister' websites (I think that's what they are called) are very supportive and caring.

Hi Emma,

My kids are grown up now.

It's normal in our case to worry about the future. I had signs of POTS, (although no diagnosis until 8 plus years ago when POTS symptoms hit hard at the same time EM surfaced), while my children were little. They are grown now. Looking back I can see all the worry about how I was going to manage was hard on me. No one else. And it served no purpose. Sometimes I'd need a bit of help. But most people need help at some point in their life.

Believe it or not, now I worry about not being able to help my adult children enough. Until I remember I'm just buying into 'mother guilt.' You are obviously a loving parent and no matter what, that's the most important thing for your child,as you know. Don't beat yourself up worrying about what you can and can't do, or what you may not be able to do in the future. As each day passes your child becomes more independent in so many ways. Doing more and more for themselves. It's always important to listen to our kids of course, but they hit the magic age of 5years plus,and the most important thing, I believe, a parent can be doing for their child is listening to them and hearing them and conversing with them. I call it the magic age because it's then that their brains are really seeing the world outside themselves and they are working out how they fit into the world. It's wonderful, imaginative, inventive and exploring time. If it comes to a point that a parent can't be very active with their child (that would be worst case scenario) they still have so much more to offer. Indeed, I think, no, I know, I spent too much time worrying about the state of the home my kids grew up in and worrying about dinner being on the table in time and all that stuff, and that time would have been better spent just doing more talking with them and listening to them. None of us are perfect parents. But being a loving one is the most important thing. And you are that, I can see it.

I've become a 'burden' on my husband. I considered myself a 'burden' and it was like a broken record, the groove playing over and over in my head. I could not see the good things I bought to our relationship. I actually dismissed the good things I offered as not being enough to make up for being a 'burden.' And for nearly the past 10 years I've punished myself mentally for it. Then I realized that punishing myself just made me feel lousy, (that nothing good came from it), and my husband (who is not perfect himself, by the way) would feel dispirited too, as a result. Plus he also started to think of me as a burden and that was mostly because of how I saw myself -- he was following my lead. I may be a 'burden' in that he's the sole breadwinner, but I'm so much more than that. I'm learning that now. I wish I'd realized it earlier.

And I have so many pain relief options still to explore I truly believe there will be something out there for me that will treat this thing effectively, and soon. New ones every day. My sister has a terribly messed up ankle and foot. She has been in extreme pain for years and no drug seemed to help it. She saw the doctor again, a couple of days ago, and she gave her some relatively new medication which has been a 'miracle.' She's walking around on her foot without even a twinge. I think that will happen for us, even the hardest cases. Her experiences has certainly made me feel even more hopeful.




I'm sorry you are going through this with a young child. I can't offer you much except my own experiences.

I've had 4 children. I have other health issues, including an autoimmune disease, which were greatly affected by childbirth. I was really ill, and finally diagnosed after the birth of my youngest, who is now a teen, but I had struggled with my health without a diagnosis for periods of time after each birth. I remember reading somewhere many years ago that the possible connection of the suppression of our immune system to allow us to carry a baby can also trigger autoimmune diseases. This could be old information, I've not had need to follow up on it myself :) . For myself I've learned certain triggers, for example, being put under general anesthesia leaves me struggling for at least six months. So, when I had the choice, I opted for the "twilight" anesthesia, even though it really created a lot of anxiety. In the long run, it is better the emotional stress than the physical stress. I've had to learn to be gentle with myself, just as I was with my babies.

Best of luck to you, :)