I live with a few Chronic Illnesses, some I talk about a lot here, some I don’t talk about much at all. I thought I’d give you a run down of some of the things I’m dealing with, some of you may have something similar going on. If you do, please feel free to get in touch with me, let’s talk. We all need to talk about things now and then don’t we?
Newest Diagnosis – February 2012 – Idiopathic intracranial Hypertension
As you can tell this is a pretty new diagnosis. Here is a link to the Intracranial Hypertension Research site, they have a lot of information. http://www.ihrfoundation.org/ From this site you can find this:
“Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” To understand how this happens, it’s helpful to look at the basic anatomy of the brain and skull, as well as the process in which cerebrospinal fluid is created and absorbed.”
There is much more information. It’s a bit complicated….mainly we have to get the CSF pressure down, either by medication or by a shunt. Eventually, most people have to have a shunt.
I’ll probably add more to this page at a later date, or add a page of its own. I’m still learning a lot.
**One thing about my condition….they originally, for over a year, thought I had low CSF pressure. I have a rare case. I kept presenting with symptoms, then I would go in and have a Lumbar Puncture but by the time I’d get an appointment my pressure would go too high and I would blow out leaks in my spinal column and leak out fluid, so when I had the test, I tested low. They would patch the leaks and I would feel better. Over and over again. Finally, they thought, this might be happening. So when I first presented with symptoms they got me in the next day, and I had a high pressure reading.
Meniere’s disease
This one has its own page dedicated to it so I won’t really go into it here. I talk about this one the most because, let’s face it, it gives me the most trouble. (at least right now.) Please see the Meniere’s Page for symptoms and details.
Wheat allergy and possible Celiac Disease (please note, not all people with Celiac Disease have a wheat allergy.) *** I recently had the gene test and found I DO NOT have Celiac Disease!! I do have a pretty severe gluten intolerance but do not have Celiac Disease.
Gluten is found in wheat, rye, and barley (and often in Oats due to cross contamination because of the way they are grown). For me gluten causes very severe Gastrointestinal issues, headaches, and sometimes a rash.
After finding out I was allergic to wheat I decided to start eating Gluten Free. I started feeling much better! My doctor thinks I have Celiac Disease, and wanted to test for it, however, he told me I would have to start eating gluten again for the diagnosis to be accurate.
Before they found out that I have a wheat allergy and a gluten intolerance they thought I had Fibromyalgia, IBS, Chronic Fatigue…
So now I’m on a Gluten Free Diet. I felt much better for many years. The diarrhea stopped, the body aches stopped, the fatigue gone…
Enter Fructose Intolerance (Fructose Malabsorption) – 2011
In August of 2010 the diarrhea came back, but this time I don’t have the horrible pain with it. I went through a battery of tests, including a colonoscopy, endoscopy, tests for parasites and bacteria, lactose intolerance, fructose intolerance…..and much more.
On March 15, 2011 I was diagnosed with Fructose Intolerance (actually, Fructose Malabsorption). I’m still struggling to get this diet straight. If you’d like to find out more about this journey please check out my other blog: Wendy Cooks, Recipes for people with Gluten and Fructose Intolerance.
Along diarrhea I’ve gained 35 pounds. I gained 30 of it in the first 2 months. No one can tell me why. (I am happy to say that the diarrhea has disappeared on most days, but I still have the extra weight I need to figure out how to get rid of.)
Biplolar I
Yes, I’m Manic Depressive. It’s not that bad though. I’ve been pretty stable for about 16 years now. Before I found out I was a wild one. Looking back, it really explains a lot. Now, I just have to take my medication, and keep it monitored. I’m very in-tuned with myself though. If anything is the slightest bit off, I am calling my doctor. I do not understand people who will not take their medication. I know a Manic episode can feel wonderful, but you aren’t yourself, and why would anyone risk a depressive episode? I had a friend who refused to take her meds because they made her gain weight. That is just irresponsible. If you have that big of a problem with the weight gain, work with your doctor to get on another medication.
Pelvic Pain
This is one of the most mysterious problems that I have. I have pain within my internal pelvic area and my tailbone area that they can not figure out. If you would like to know more about this I would be happy to talk with you about it, but I’m not sure how to talk about it on a public blog. I’ve been told my Levator-Ani muscles are too tight, and I’ve also been told I have Interstitial Cystitis. Both of these conditions cause a lot of pain. Thankfully, I do not have a severe case of Interstitial Cystitis.
Chronic Hip Pain
In 2009 I had my right hip operated on twice for a torn labrum. I am still having pain, and a popping sound from this hip. After seeing 2 specialist and 4 physical therapist this has not been resolved. I have been diagnosed with hip dysplasia, but it isn’t to the extent that it should be causing as much trouble as I’m having. My latest doctor wants to operate again to see if he can relieve some of the pain and see what is going one (he is not the surgeon who did the first two surgeries.) I’ve decided to wait on this until we can get the Meniere’s under control.
This doctor believes that some of my Pelvic and Tail bone Pain may be caused from my hip dysplasia. He has put me on Limbrel, this is a pharmaceutical food supplement that helps with inflammation, and it has helped a lot. It also helps reduce the pain on days when I’m able to work out in a warm pool.
Hypothyroidism
This is mainly controlled by medication. (at least that’s what they tell me.)
Migraines
Sometimes I’ll have a migraine every day for more than a week, then sometimes I’ll go a week or more without having one. I always seem to have more than 12 a month. I know this because I take Maxalt when I have one and I can only get 12 a month and nearly every month I run out.
I’m sure some of this is connected. Hopefully, we’ll figure some of this out and I’ll find a way to live a more “normal” life again. Right now, all I want is to be able to stop the vertigo from the Meniere’s, and hopefully still be able to hear.
Premenstral Dysphoric Disorder.
I was just diagnosed with PMDD this past week. (June 8, 2011). My doctor put me on Prozac to try to help with the symptoms.
Some people think that PMDD is just PMS, but it’s not. My symptoms begin with ovulation, and finally end with the end of my period. That means I have symptoms for 3 weeks out of the month. What a pain…literally. To find out more about PMDD check out the definition on Wikipedia http://en.wikipedia.org/wiki/PMDD.
B-12 and Vitamin D deficiency
I’m taking B-12 injections, and taking extra vitamin D every day. Many people with food intolerances have vitamin deficiencies. I also take a multi-vitamin to help.
I was curious if you had seen my post about Gluten Ataxia (http://lifeischange.wordpress.com/2011/04/12/gluten-ataxia/). My mother had Meniere’s Disease for years (I’m not sure if it’s possible to be “cured”, but she is doing a lot better now), and I’m aware of the overlapping symptoms with some of the other issues that run in my family (Fibromyalgia, etc.). What I read about Gluten Ataxia also sounds similar. Since you already know you have Celiac Disease as well, I wonder if you may have Gluten Ataxia and if it maybe exacerbating your Meniere’s symptoms.
No, I hadn’t seen that post yet. That is so interesting!!
I actually don’t know for sure that I have Celiac. I have a wheat allergy, and after going wheat free I found out more about Celiac and decided to go gluten free. My doctor believes I most likely have Celiac, because my symptoms got so much better. (Including the strange rash I would get, that they now think was dermatitis herpetiformis.) I decided not to start eating gluten again, just to be tested. (plus, a lot of people I know who have Celiac had been having trouble with their insurance after being “labeled” with Celiac.) Since the treatment is the same, I just decided to stay gluten free. (I think I need to change it in my bio. that it is suspected that I have Celiac Disease.)
Thank you for bringing my attention to Gluten Ataxia. I will look more into it!
I too was much clumsier than I am now. And my hands don’t tremor as much. I was on a drug for a long time that could cause tremors, so I always assumed it was that….who knows?? I also hate escalators, or anything that moves me…ick.
Thanks again,
wendy
Well, we don’t have all the same troubles, but just the fact that you can understand what it’s like to deal with multiple illnesses has helped alleviate some of the unspoken loneliness I’ve often felt. I wish I had the energy to write more, to share my journey as you have so others could benefit as you have me.
Molly, How very sweet. I find it cathartic to write, so that’s what I do. Lately, I haven’t been as up to it as normal, this last procedure has caused a lot of pain. But it’ll get better. (always have to believe that!) I hope what you are going through settles down soon, and you can feel better. I do understand the loneliness. I feel it more from my in person friends. I just don’t have the support I long for. But I found it here. Write when you can, when it helps you. Remember to take care of you!
I stumbled across your blog and I wanted to know about the “ants that bite”…
You are not alone.. It seems like we have somewhat similar illnesses,
except for the hypothoiridism and chronic hip pain…
I dont know what I wanted to say with this comment, I just felt like saying something. Cause I’m glad I’m not alone. It makes me feel less crazy and more normal I guess.
You are inspiring.
I have IBS and IC so I must be really careful on what I eat. I have been gluten free and have followed the Fodmaps Diet for the past 6 months. I am much better even though I so miss chocolate, coffee and sweets in general!! I started Pelvic Floor therapy with an amazing therapist and this has significantly helped my IC. She convinced me to start Yoga which I have grown to really enjoy to stretch out those tight muscles. Just some tips I thought I would share.
Lisa,
thank you for sharing.
I too am on a gluten free and low FODMAPS diet, but without as much success. I’m going to see a dietitian next week….hope she can help me.
I had Pelvic Floor Therapy for over a year, it seemed to be helping at first, but after a while (as with all physical therapy for me…it’s strange) I stopped getting better and even reverted to my previous pain.
I used to do Yoga, but with the Meniere’s it’s hard. I can’t stand to bend over, never have my head below my waist, can’t move my head much….ect.
I am working on things. but I have to admit a lot of my issues were put on the back burner for a long time because Meniere’s over took my life.
Thank you again for sharing your story.
I do hope to get to the UNC Pelvic Pain Center in the not too distant future, and hopefully the Meniere’s will settle down and I will be able to do Yoga again…I miss it.
I also found water therapy to help a lot.
good luck
wendy
Wendy, I found your blog and I can really appreciate what you are going through. I have been to the doctors and specialitsts more times than I can count over the past year. I also suffer from multiple chronic disorders. Here is my list:
anemia
hypothyroidism
arthritis
bursitis
tendonitis
tenosynovitis
ibs
chronic headaches
carpal tunnel
hip and shoulder pain
anxiety
fibromyalgia
sometimes I wish that I had cancer or something more visible so that people remember that i have daily chronic pain that never goes away. Sometimes I feel alone with this all.
Kerri,
I promise you are not alone.
Many of the things you’ve listed I have been diagnosed with also. Some I haven’t mentioned in my list…arthritis (osteoarthritis, in my neck mostly). I’ve been told I had bursitis, tendonitis,…but I’ve been told so many things about my hip/pelvic pain I just don’t know what to believe any longer. IBS…mine is caused by the Fructose Intolerance. Carpel Tunnel – in both wrists (but it only bother’s me occasionally, thank goodness). Shoulder pain with neck pain (I had a tumor in my right arm when I was young, so my right arm is 2 inches shorter than the left, that causes me to be off, so pain. I also fractured my 7th Cervical Vertebra, that’s where I have most of the arthritis). I was diagnosed with Fibromyalgia, but found when I cut gluten out of my diet the symptoms almost completely went away, so I don’t claim that any longer, however some days I feel like it’s still a force in my life). I also have PTSD, because of the Meniere’s.
I didn’t repeat things I know I have on my “ants” list.
I hope you don’t feel so alone now.
I do understand the feeling wishing you had something more visible, or even something that will end (yes fatally, but end just the same). I too have pain all the time. I’ve learned to deal with a lot of it, but often it is too overwhelming to be able to tolerate without help. I have chronic persistent headaches, with the hip and pelvic pain…and shoulder and neck…shoot, I hurt more than I thought I did. : ) The migraines i get are horrific. I’m excited to be going to a headache specialist next month!
I try hard not to let all my illnesses get me down. I used to exhaust all my resources trying to fight it all, but finally I realized I had to accept things. This is part of me. That doesn’t mean I’ve given up the fight, but I used to concentrate all my energies fighting and didn’t enjoy any part of my life. Now I take advantage of every day I feel well enough. Each day I feel well enough i do something enjoyable. It has made a huge difference in my life.
I firmly believe everyone has to find their own way to deal with things like this. So how I deal with it may not be the best way for you. However, I think it’s VERY important for everyone who has chronic illnesses to know they are NOT alone!
There are so many of us…too many of us…please feel to reach out to me any time.
hugs to you.
wendy
It seems to me that when one person has one serious medical problem they often have more than one. I suspect most of this is genetic and there are triggers. One day we will have the understanding of how to deal with this but right now it can get pretty hairy for those of us with more than one problem. The good news is that Meniere’s is supposed to burn out over time – mine pretty much did. Maybe yours will improve. The Migraines? I dunno. I used to have Cluster Headaches and they are gone – although I am still a headachy person. I’ve had problems with bursitis and tendonitis and heavens knows what else – mostly I’m over them. I’m fortunate that the fibro is easily treated (for me) with an antidepressant I tolerate well. Keep on truckin’ – it is all any of us can do. In time, some issues may resolve – or not. We can only ask for the strength to endure until tomorrow.
I’m still truckin’ on. But this has been one hell of a month…wait more than a month. I know that they have said that people often “burn out” with Meniere’s, unfortunately, not everyone does. But my hearing is about totally burned out, so I can’t worry about that any more. (no I’m not worried about that at all)
I also have chronic migraines….they say they may get better after menopause…they might not. The Botox helped, so I look forward to getting on a regular schedule with that. I also have Migraine associated Vertigo (MAV) but it different. Hard to say why, but it is. With Meniere’s there is no reprieve while it’s going on, with MAV, I can often find a spot where it’s less spinny and I can get through it.
I also have Idiopathic Intracranial Hypertension. That means my Cerebral Spinal Fluid Pressure is too high. But lately, the symptoms I’ve been having have been for low pressure.
That’s a big reason I wish I was home with this happening. The doctor’s here would have to play catch-up, and Duke isn’t here. By that I mean, all my doctors are in one place and work together, I can’t see that happening here.
If I’m not better by mid January….a lot better, we are going home. some how.
It will get better.
I’m just sad it got so much worse right now.
(you know I just answered this in response to It’s So Bad….I’m so off today.)
Thank you for your wonderful thoughts. this too shall pass….hopefully on the good way.
Hello, have you looked into Lyme Disease? A lot of people with lyme are first diagnosed with all kinds of things and then they do their own research and find that lyme is the thing that ties it all together and is behind *everything*. Lyme can give you everything you have on this page. The problem is that not much is known about it, primary care doctors dismiss it entirely and the testing it highly unreliable. I urge you to research it thoroughly, a good place to start is the IDSA website. Lyme is a bacterial infection, so if you take steroids you make everything better in the short term but worse in the long term. The good news is, there is treatment available. Some people are cured and nearly everyone improves significantly if they get ‘adequate’ anti biotic therapy. I’ve been on it for 3 months and I’ve gained so much quality of life.
Decima x
Decima
I come from the rural parts of South Carolina, so Lyme Disease is one of the first things people are tested for when doctors start to scratch their heads.
Yes, I’ve been tested, more than once actually. No lyme disease here.
I hope you improve to the point you were before.
wendy