Noreen

Hi- I use to enjoy gardening before the dys monster got worse over the last 2 years and now I just hide in the house from the heat and sun. However I have a rolling garden cart like this which enables one to move around in a scooting squat. Have to conserve energy however you can. Sweeping with a regular broom can be quite hard on the body. I have an ergonomic broom I got a couple years ago which helps because I can sit in a chair and use it if I need to. Also I have a terry cloth floor cleaner from Target (concept is similar to this. For floor cleaning, steamin is the way to go - a group of women wrote a great review on Amazon so you can check that out with a floor steamer search. From personal experience, I had the Eureka Floorsteamer for 6 years before it gave up - worked very well, the Shark is not worth it as it is not at all durable - lasted only about 6 months before my son knocked it over and it snapped in the middle. I now have the Bissell steamer which works okay but I wouldn't buy it again. Since your son is 10, make sure you keep any small chairs you have for him. If sturdy enough for you to sit on tghey can be helpful for lgetting lowering to the floor level and then you can reach for something - this way you are not doing a full bend over to pick something up. Kids stools are also helpful for putting a laundry basket for taking laudry out of the dryer. Again, it reduces the 'bend over'. Microfiber clothes (good ones) are your friend as damp you can clean windows and dry they are great for dusting - will fit on the end of a Swiffer for doing walls. Now is a great time to get your son to help - he can easily put his clothes in a hamper and bring laudry to and from the machines. He can dust and clean with microfiber clothes without chemicals. If you can get a rolling garden stool, he could vacuum while you roll and supervise. A stool in your kitchen is a good idea for resting. One where you can put your feet on a bar is a good idea to help exercise your calves a bit and keep the blood moving. In my former life as a health educator for lead poisoning prevention, I encourage using a cut down gallon milk carton as a cleaning bucket - I encouraged it because the clientele my county health people were working with usually had financial issues but the concept works for those of us with disabilities and I encouraged the use of the buckets as facilitator of my local chronic pain group. It is significantly lighter to lift a quart of water with a couple drops of cleaner thereby conserving energy for other things. Cooking - the crockpot is your friend. The easy clean liners for crockpots are available everywhere these days. Cook in double batches and freeze a dinner.. If you are buying anything suggested online, consider registering to benefit the forum Hope some of this helps - I don't have any more energy at the moment, noreen

Nina- glad you got AC back. I'm so sorry that had to happen while you are still recovering from the accident and everything else. I hope the rest helps. {{hugs}} noreen

I also have a great deal of situational stress. I don't know if it is the cognitive issues, pain, or what but I am not able to mediate on my own as I used to. I find helpful.

These ice blankets are worth a shot. http://www.amazon.com/gp/product/B001G7QGT...m=ATVPDKIKX0DER They are certainly better than nothing. I've only used one of these I had bought from the grocery store for $10 in a pinch. Obviously amazon's is a much better deal. I could envision using industrial velcro on the inside of a man's tailored shirt or a windbreaker and on these to hold them in place to get some relief. Just an idea - at the least you'll be able to use them for coolers for your family.

Eric- Thanks for the link to the article. My full faint resulting in my NMH dx 7 years ago caused a rather nasty concussion - happened at Old Navy and their tile floors are not soft. I've had other concussions from car accidents also and had no idea these all played into the dysautonomia puzzle. Tks again, noreen

Sorry you have been having a bad time with the heat. I get muscle weakness like that related to my fibro dx or at least that is what they have been telling me for 20 years. Mine flairs when the barometer is changing such as there is a storm front moving in.

I tried Provigil years ago. It helped with the fatigue but not completely. I have had the best luck with the short acting Adderal.

How wonderful that you found a med that works for you - I'd love a day of energy hope it continues to help noreen

Endure- Did it help at all?

Maxine- Glad you made it home okay despite the pain from testing. thanks for sharing the info on the conference. It really does sound terrific. How wonderful that your husband supports you in this. Rest up - noreen

Wonderful, wonderful, wonderful! With your newfound health you can enjoy your little girl more and more. Amazing sometimes how things work out - I remember how nervous you were about a toddler rather than a school-age child. I'd go a bit slow with commitments if I were you, though. I am just worried about a relapse. You probably are thinking of work a day or two a week which is probably doable with the child. As a plaque on my kitchen wall says..."Until further notice, Celebrate Everything!" noreen

Does it matter what position your legs are in when you sunbathe or do the splotches appear whether you were laying down or sitting up? How long does it last?

Glucosamine is for osteo arthritis - the wear and tear variety. There are 171 different types of arthritis. It usually takes a while to get a new patient appointment. Aspirin, alleve, motrin are the over the counter drugs to try. If it continues to be bad you may have to go on the wonderful horrible drug prednisone. It all depends on the rheumy. It took me six months to get my first appointment and I thought I was going in for a fibromyalfia consult 13 years ago. First appointment I was dx with fibro and benign joint hypermobility syndrome. and given blood work. Two weeks later my hands blew up and I went back in, found out I had a positive RA factor, put on prednisone and began the autoimmune waiting game - it was probably another year or so before the dx became official. You should go to your primary doc in the interim - he/she should test your sedimentation rate and c-reactive protein and prescribe prednisone to alleviate the pain and inflammation as indicated. I broke my big toe during a flare and had no idea because the bone pain from the flare seemed the same. It feels like you are walking on broken glass and your hands have been smashed by bricks. Obviously this is just my experience but if I were you I would not delay getting it checked out.

Does the rash on your face go beneath your eyes and over your nose, like these images show? If so it is called a malar rash and is one of the things rheumatologists look for in dx lupus. My rheumy dx'd my livedico which is another condition that can happen with lupus or can indicate antiphosolipid syndrome, also known as Hughes Syndrome. Take pictures and make an appointment with a rheumatologist. Auto-immune stuff will not cooperate with our MDs schedule and the rash won't necessarily be there to show the doc.

ANA is anti-nucclear antibody test used for screening for lupus and autoimmune disease. You do need to see a rheumatologist and it sounds like you get to join those of us regularly getting a couple dozen blood tests. Please make an appointment as soon as you can - if it is RA or lupus, the pain you feel now is nothing to a full blown flare. Hope it is nothing and is miraculously gone by morning (giving you enough time to get a rheumy appt)

The pattern you mention made me think of livedico reticularis. Mine is usually more prominent in cold weather. Check out the images on the link and see how it corresponds to what is going on. The site is very good for skin conditions.

Hello Mary- I am glad you health has improved to the point that you are able to participate in the forums. I also have Raynaud's and struggle with migraines - I haven't been able to read a novel in 2 years which is absolute torture for me. Welcome noreen

I cannot tolerate compression stockings due to the neuropathy in my feet - with the burning and pain I just can't have stockings on or even socks for any length of time. I ran across these and was wondering what you all thought. Would these running leg sleeves offer the compression we are after? with only a few brain cells waving forlornly at each other, I am unable to determine whether iI would still have pooling in my feet or if the compression of the lower legs would be enough to decrease it. thoughts? (I was depressed that I couldn't watch the local triathalon - tried to drive there but couldn't park and get out of the car - horrible weather, no energy - but I got to see pretty leg sleeves!)

I would worry much more about mercury and pcb poisoning from farm raised salmon. My Environmental Health professor authored the study showing farm raised salmon were fed mercury laden feed. He urged us all to do fish oil supplements as these are tested - of course he was most concerned about females in child bearing years. With all the garbage dysautonomia throws at us we honestly would not know if we had mercury poisoning - it would just be more of the same old same old. My new neuro insisted on running the full heavy metal panel given my symptoms and specified that I was to be off ALL fish, including my allegedly mercury free fish oil capsules, for 10 days prior to the test. I don't see it as a cause of POTS but the potential problem I see is that it could be contracted by any of us and the symptoms would blend into our usual and not raise any red flags - that would set us up for additional chronic problems.

bella- I was going to recommend this ramp http://www.discountramps.com/threshold-ramp.htm and then noticed it is on back order until August. However, that is not all that far off now. In the meantime, here's a great low cost version with duct tape. the story has to do with making your own curb ramp that is light enough to carry but the theory might work for a while. duct tape ramp

I ran across this scooter and since it is vacation season for some, I thought I would share. It is beyond my budget but it looks fabulous for conserving energy and being able to sit. Travel Scooter Some of the testimonials speak of teenagers trying to get parents to buy one after seeing this scooter. So perhaps this is the 'cool' mobility device some forum members were looking for a few months back. No stigma with this mobility device!

I am so glad your daughter has you to look out for her well-being. It certainly sounds like you are approaching this in a highly systematic fashion. Your charting is undoubtedly helping the medical professionals see the forest from the trees with your daughter's condition. Aside from her menstural cycle what other factors are you able to incorporate in your chart to share with the docs? prayers and positive energy for healing - noreen

{{{jennifer}}} so sorry you are having a rough time at the hands of the medical profession. Horrible aspect of this stuff is hating to see doctors. I so totally get your anger. My cardio really doesn't want to deal with me either - no structural problem, no interest. hope something works out, noreen

Wonderful that you were able to go and hug your mom. Very courageous of you but well thought out 'just in case' so you are to be commended for that also. Super news that she is on the mend. Hopefully you will rest easier now knowing in your heart she is getting better. {{hugs}} noreen

Hope you are feeling better. Given the reports, I would try again when I had a week to ten days clear to allow your body to adjust. I hope it works for you but I know it generally will take 6 months to know. LDN did recently get approval for study under NIH. You've probably seen this e-book with patient stories but just in case. LDN has also been used as a topical prep, apparently with good results, and that modality might be worth looking into if you can't tolerate the pills. best of luck