I need support!

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Hello,

Im back....again. Some of you may know me and some may not. I posted a new Autistic Princess video finally!
What Im posting about now is about me and my kids. Having Asperger's myself its difficult for me to just go to any support site and get the help I need. First of all Im not looking for a "wake up call" as its known here or am I looking for anyone to be nasty or harsh with me.
I have been suffering with severe chronic pain for the past few years. MRI's, X rays and CT scan show that I have several problems in my spine. My Sacroilliac joints are fusing and I have stenosis (narrowing of my spinal column) though out my whole spine. I also have bone spurs which are little pieces of bone that are growing out of my spine. On top of that I have fun intestinal problems. The only disease that can cause this is called Ankylosing Spondylitis....amusing but it also is shortened to AS. One of the problems that Im having is Ive been shuffled around to different doctors and even though I was diagnosed with this auto immune disease in my 20s Im having difficulties getting a firm diagnosis now. I did have surgery a bit over a year ago to replace a disk in my back but at the time didnt know that I had all this other damage. I just knew that I had pain in more than that one spot but Im not very good at communicating my pain to other people...they want to know what the pain feels like and that pain scale they give me is completely stupid....Id rather have the one with the faces on it, it makes more sense to me.
I recently moved to France from California. My doctors there found the fusion and one doctor told me that it could only be this disease. Then saw a Rheumatologist who said that my symptoms were mild and my blood work was not showing that much inflammation. Its difficult when you are in so much pain to have a doctor tell you that whatever you have is MILD!
My General Doctor here in France is sending me to a new Rheumatologist because the last one was completely horrible to me. So now I have had two bad Rheumatologists (this new one was even worse) He was rough when handling me (I have issues about being touched by strangers) he was pulling and turning my head back and forth causing me a lot of pain. He was very rude and even though my husband tried to give him all my medical reports and a CD with my MRI's, XRays and CT he just shoved it back at him and said he didnt have time for that (mainly because it was in English but he could have looked at the disk). So we wait a month and go back and he says to us that he didnt find anything. There is a blood test called the HLA-B27 and 70-80% of people with the disease are positive but I am negative. We think that this is why he just blew me off. From what I am told a lot of doctors are uneducated about this and the fact that women have the disease at all. A lot of them think that it is only a mans disease....sounds like Asperger's huh? The man did not even have a radiologist report of my X rays. My husband got upset and told him that you can clearly see the damage and fusion on my MRI's and CT so the doctor agreed to look at it but while my husband was trying to talk to him and tell him how much pain I am in and how much it affects my life he picked up his little dictation tape recorder and started talking into it.
Sorry Im going on and on but I have the tendency to do that....at least in writing. If I was speaking all this would be choppy and Id be jumping back and forth and confusing the heck out of you.
So to the point of all this....Im very depressed in horrible pain and I have two little kids to take care of ,my 8 year old Aspie Luc who is very angry lately mainly due to the move and me not being able to do a lot and my 5 1/2 year old Autie, Maddy AKA the Autistic Princess who is also having difficulty adjusting. I have no help at all where as when we lived in California I had respite care for my kids and therapy three days a week for Maddy and my son had his social group. They are adjusting well to school. Luc has a friend and his French is coming back to him due to having two years of French immersion school. Maddy is in a very small class and all the other little girls take care of her. They are more strict here about bullying so at least that is a good thing. The therapy has been very slow. We have had appointments at the center for Autism and they are supposed to start soon with therapy at home, school and the center. Luc has an aide as they had an extra one at his school but Maddy is still waiting.
Im sorry to use this place as a "support group" (please no one tell me to go to the Haven, Ive tried that and got little to no response). I have tired chronic pain support sites and Ankylosing spondylitis support (I get a bit from one of them) but none of them understand having to deal with Autism on top of everything else. As soon as I mention Autism people run for the hills.
So sorry if I took up space or bothered anyone I would just like to find somewhere where people understand the extra stresses I have so when I need a place to vent or a place to seek advise I can go....I hope I can come here. I used to be able to get a lot of great advise and help here on Wrong Planet its why I always come back. Thanks for reading.
April

I wish there would be something that I could say that could help you.

You have my sympathy. That doctor sounds rubbish and having intense pain called mild, well, I can see how this would add emotional distress to your physical stress.

My Mum has Fibromyalgia but for a long time her doctor said it was all in her head, what stopped this was me telling the doctor that the pain was real and that her (the doctor) telling my Mum that it was all in her head really wasn't helping. The doctor then did a good bit of research and found out what it was called. So now my Mum knows foods that make the pain worse and those that make the pain less from a nutritionist among other things to treat the pain.

I understand that now you're in a lot of pain, persistance is probably key here. That and finding a respectful specialist, some are so bad (bedside manner wise) that you can wonder why they are still working but good doctors do exist (even if they sometimes need a push or two).

Would aquipuncture (spelling incorrect) help with the pain?

That reminds me of the time my fiancee was in a car accident and complaining of back pain...the doctor didn't even do an X-ray, which is standard procedure! She said it was just some soreness. Turns out his back and neck were f'd, and his shoulders and hips were f'd, too. Then, he got a great doctor, who gave him two surgeries on his back to try to repair the damage, and he is doing much much better. Been a process of a few years or more, though.
I guess my point it to hold on there...and perhaps a new doctor is in order?
Also, if you know the pain scale you're talking about (I don't), maybe you can find it online, print it out, and bring it in? If it's a visual scale.
BTW, I added you on youtube.

Have you heard of the Specific Carbohydrate Diet?

It is apparently very effective in combatting Ankylosing Spondylitis in many people, ( and many cases of IBS ), something to do with AKS perhaps being caused by a bacteria called Klebsiella which lives in the gut and absolutely loves eating unabsorbed and poorly digested complex-carbohydrates, pretty much the same ones as those which people with FODMAP sensitivity/intolerance react to, ( FODMAP = fermentable oligo, di, and mono-saccharides and polyols, like fructose, galactans, ( ? ) , fructans, inotol/xylitol/sorbitol etc ), aswell as starches, and these bacteria having a very similar structure to a molecule/chemical that a certain number of people have an inherited/genetic autoimmune reaction to.

There is one particularly good website on the subject, a related recipe and support site, and a book on it which has refs to the research etc. I don't have them to hand but will go look them up.

Good luck, and best wishes anyway.
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Last edited by ouinon on 20 Nov 2010, 9:52 am, edited 1 time in total.

Here are some links:

Great overview/article on the connection:

http://www.thehealthierlife.co.uk/natur ... 00044.html ( NB. Keep your mouse at the edge of the page on this one or you'll have to keep "hiding" an annoying ad which pops up the whole time )

Another good, and more academic/scholarly, paper/article on this:

http://www.kickas.org/medical/15.shtml

And the recipe and support site, "Breaking the Vicious Cycle", which was set up mainly for IBS sufferers, but has been discovering the links with AKS and other chronic degenerative diseases/disorders the deeper it digs into starches and other complex carbos etc:

http://www.breakingtheviciouscycle.info/index.htm

Hope that they are useful.
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Awesome...I was just going to suggest that maybe diet could help with the pain--not make it go away, but perhaps certain foods are aggravating your pain response. That happens to me, and its taken years to realize it.

I'm sorry you're going through so much right now. Hope you have the strength to keep advocating for yourself, despite all the changes. Next time a doctor (or anyone else) starts touching you and setting off your sensory issues, you should have a pre-planned response to help them understand. I find I'll tolerate this stuff and let it get really intense, because I don't know how to explain--so what if you planned to say (maybe even in French): excuse me, I am autistic, and I need you to tell me how and where you are going to touch me before you put your hands on me, otherwise my nerves become overloaded and I get emotionally overwhelmed. There's probably a more gentle way to say that...probably a better way, but seems like a good sort of phrase to have at the ready.

I wish I had advice to offer, but I just wanted to let you know that we are here anytime you want to vent. That is what I love about WP. You are facing some real struggles, and you really need to have a place to go where you are not afraid to share and you won't be judged. My sympathy is with you too. Hang in there and I hope you find answers soon!

Thank you everyone for your responses. Pandorazmtbox that is a really good idea about telling the doctors about my sensory issues before they touch me. I speak very little French so its even worse for me to have someone come at me because I have no idea what they are going to do. My husband is French and I can have him talk to the doctor before hand.
I have started eating better since I moved to France and Ive been loosing weight which is good as I was a bit overweight when I got here now Im back to a healthy weight. I think it does help with the pain. Unfortunately I have to take a lot of medications which do not help with my IBS. Im on pain meds, celebrex, a neuro muscular drug, something to protect my stomach from the celebrex and medication for my constant constipation due to the pain meds. Its like that silly old saying, Im robbing Peter to pay Paul. Also with the diet thing I have read about it on the internet. There are many people who swear by it and others who say that it did nothing. It sounds very complicated and Im not sure what I am supposed to eat? They dont want you to eat most grains or "nightshade" vegetables, dairy and even meat....whats left? From what I understand its a macrobiotic diet? or I may be wrong. I will keep it in mind though even though my husband who is a biologist says the theory that its caused by a this bacteria is wrong because it is a very common bacteria and is not pathogenic. Still I thank you Ouinon for taking the time to give me all the links and I will look at them.
LostAlien sorry to hear what your mother went through and I know how she feels. Im glad she got the diagnosis and is getting help. I think there are a lot of people who are in serious pain and because the doctor cant figure it out they tell the patient there is nothing wrong.
Anyway....thank you all for your posts it makes me feel better to have people to talk to that understand how hard all this is. I have been feeling very alienated. I have my husband but he is under a lot of stress too with a new job (he has a professors position and this is the first time he has really taught...he has been doing only research for the past 20 years) plus helping me with the kids and taking care of me.
I will post again soon because I have some things regarding the kids that I need some advice on.

The SCD is not that complicated in one sense, but it is pretty restrictive, so it depends on how much difference it makes to you/someone whether it will be worthwhile to you/someone.

Simple version of diet:

Most fresh unprocessed meat and fish ( apart from some oily fish, it varies ), is probably ok, as are eggs ( for most people ), plus lettuce, and some other salady foods.

If you want to eat anything else that's where it starts getting complicated, which is why the Breaking the Vicious Circle/Cycle site has a table with lists of ok foods. I think that the FODMAP lists are very similar, except that starch on its own is not usually a problem for them, and everybody's tolerance to vegetables, grains/cereals, dairy and fruit varies, so you'd need to test them separately over time.

But if you don't want to go all the way, even for a week or two, unless you are pretty sure that it might work, then a less restrictive approach would be to just cut out grains/cereals ( including rice ) and all other starchy foods including potato and corn, plus pulses, peas and nuts.

You could still eat all ( ripe ) fruit ( apart from bananas ), and most vegetables, plus meat, fish, eggs, and oils, and dairy.

You might found that made quite a difference already.

The bacteria is, as your husband says, very common, and for most people it is not pathogenic, but the reason why it may cause a minority of people serious problems is because some people have an inherited/genetic autoimmune-system response to a molecule/chemical which these bacteria have on their cell walls, and when they flourish in your intestines they provoke a constant chronic autoimmune system reaction which sets about fusing your bones together.

When AKS is present *in combination* with IBS as in your case it seems to be a fairly reliable sign that a Specific Carbohydrate Diet might be useful.

Good luck anyway.
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First off, please don't ever feel like you are bothering anyone when you post here. I read every word you wrote and, while I can't think of anything solid to offer you, I can feel your pain and I wish I could offer something solid.

With respect to trying a specialized diet, I would focus less on the theory and more of if it is something practical to try. There seems to be a lot of voodoo science in the area of diet that has accidentally led people to figure out something real. When you are at your ropes end, it is the one thing you know that isn't likely to hurt you, and maybe can help you. But, diet programs can be a royal pain to figure out and follow, and sometimes that by itself adds stress you don't need.

I hope you can find a suitable doctor to help you. That would be a big step.

Perhaps talking to a nutritionist would be a good idea because s/he could direct you towards a healthy diet within the limits of these diets. I know that when my Mum eats things she shouldn't she gets really tired and feels more pain than usual.

I hope you get the help you require sooner rather than later.

Im going to try cutting back on the starches but its really hard to deny myself some fresh baked baguette . Im not sure if the diet will work though as Ive read the links and it says that people with the HLA-B27 tissue marker are the ones that are affected by the bacteria....I am HLA-B27 negative. There are people with Ankylosing Spondylitis that are negative....about 10-20%. This is the main reason the last Rhuematologist just dumped me because my test came back negative. He just ignored my X rays not even having them read by a radiologist and ignored the blood tests that showed inflammation. He just basically dismissed me until my husband told him that if he looked at my CT he could clearly see the fusion. We still have not heard back from him and I hope that we can get my CD back to take to the other doctor.
Thank you all again....and thank you DW I guess I just always feel like Im bothering people, dont know if thats an Aspie thing or not.

Perhaps a personality trait that gets amplified a dozen times when you are AS?

Take care of yourself, and good luck getting it sorted out with the doctors.