Noreen

I have the same issues although I have attributed it to RA. It has always puzzled me, though, that my labs are good yet the symptoms such as this are still there.

sorry duplicate

I had one removed 8 or 9 years ago. It has come back but not as bad as it was. Have had about 5 gum surgeries so I know where you are coming from there! Are you hypermobile?

I have been on it over a year and still get the tingling feeling. I can generally ignore it at this point. I wouldn't say it has done wonders with my energy level, though. It seems you are benefitting from it so you may have to learn how your body is reacting and play around with dosing and timing a little.

Hi there- I could easily have written your post (provided my fingers worked) It actually helps to know someone else is going through the same things yet it is so hard for us to parse what is physical and what is emotional. I have no support myself and feel guilty that I cannot even reliably work/volunteer at my son's school. It is a very small school (2o kids) relying on parents to help. I cannot tell how I will be from day to day and hour to hour. For my own sanity, I need to get out more yet if I expend energy doing that the very basic housework I can do doesn't get done - gone are the days when I could clean for 12 hours to whip things into shape. Now generally I only have 3 to 4 hours of energy a day and divided into 20 minute chunks throughout the day. If I go to the doctor's the energy has been used driving there and so with luck I have 2 or 3 twenty minute chunks left. Even deciding to go to the doctors takes energy and if the result of getting help is iffy that ends up balanced against the sure thing that the house will get dirtier. Nowwhat's reply was superb. If I only had a gauge to tell me when I have pushed and pushed too much before I flop!

What compression shorts do you find most beneficial? Where do you get your compression garments? tks, noreen

Ridiculous what has to be put up with! Interesting that they get to put in your chart how disconcerted they were about you changing in front of nurses yet the psychiatrist walks in while you are on the commode and stays to chat - do we get to dx her? Hope you are feeling better.

I have hair loss issues, too. It is bad after surgeries and any stressful time. However it has happened this year without either of those things so I would agree with the stress theory and with the bad dysautonomia spells theory.

I have a son on the autism spectrum.

I am so sorry you had this experience. The tough part about this is whether the chiropractor is associated with the pain doc. In other words you have to cooperate in order to prove what you already know - you need pain meds and are totally responsible in their use. If you can do it at all keep your Tuesday appt and tell the doc in no uncertain terms how badly you felt and that it appears you cannot take anyone touching your neck at the present time. My reasoning for this is things will be documented and perhaps you can get some relief for your lower back through a interferential unit. wishing you the best, noreen

Erika- So glad your treatments are helping. Julie spoke for many of us on how frustrated and angry we were on your behalf. It is wonderful that you are able to go out and enjoy yourself. noreen

I use enteric coated fish oil capsules. It definitely makes a difference. I was originally prescribed fish oil years ago for inflammation when I was nursing my son (now 15). I couldn't stay on them long term, due to the problems people have mentioned/ Going to the coated ones a couple years ago and spreading the dose out over the day made a difference. The problem with a diet heavy in fish is mercury.

Hi Bella- I have similar problems with statins. I am on fish oil, too. I was told the dosage is 4 grams, I take 2 in the morning and 2 at night, Hope you are feeling better today. noreen

((hugs)) Be easy on yourself. the move must have been extremely stressful to your system even if your mind cannot see it. It seems many of us are used to putting our mind to problems and pushing through ignoring any pain/discomfort that may arise - after all, those years of doctors telling us there is nothing wrong with us has to take a toll. We just suck it up and move on until we are forced to drop. Extremely frustrating! I hope you stocked up on epsom salt and are soaking when you can. noreen

Benny- I second putting off back surgery as long as possible. I didn't see any rheumatology consults listed. The blood work they order tends to be very specialized. Given your age and back pain, I am thinking about Ankylosing Spondylitis. There is an association with AS and other autoimmune diseases and PoTS. Obviously, I am not a doctor and I could be off base here but your description of flares and your costochrondoitis history lead me to think this should be investigated. wishing you the best, noreen

I always pick up things with my toes! I never understood how people can wear shoes in the house because how would you pick things up?! Interesting that this comes up now as I have been wondering recently if it is an EDS thing. Doesn't work for cat litter, though, and that is where the squatting comes in.

I don't see an elevated result here although I am not sure what they mean by H - usually results are given as ug/dL (micrograms per deciliter). They list the type of sample so the physician can determine whether there is a possibility of collection contamination - if it is a capillary sample (blood drawn from finger - known as a fingerstick) the results can be higher due to contamination by the environment, i.e. the lead could have been on the finger and not in the blood but was transferred to the sample by the act of getting the blood. Lead at less than 2 ug/dL is not a cause for concern. Is there a reference on the slip telling you what the H is or what the normal ranges are? If there is no indication that they mean mmol/L or anything, the results may mean the highest found was 1.8 ug/dL. The other part of the result LEAD ME GFAAS means that the lab did the testing for lead using the GFAAS method. GFAAS stands for graphite furnace atomic absorption spectrometry. Heavy metal testing can be rather specialized and the nurse may not have been familiar with how the results are listed.

Squatting while keeping the back straight acts against blood pooling in the legs. Bending over is avoided at all costs.

Tilt testing dx's POTs and NCS (neurocardiogenic syncope). Severe cases of NCS necessitate the implantation of a pacemaker.NCS is a dysautonomia. from americanheart.org - "Neurally mediated syncope (NMS) is called also neurocardiogenic, vasovagal, vasodepressor or reflex mediated syncope. It's a benign (and the most frequent) cause of fainting. However, life-threatening conditions may also manifest as syncope. NMS is more common in children and young adults, although it can occur at any age. NMS happens because blood pressure drops, reducing circulation to the brain and causing loss of consciousness. Typical NMS occurs while standing and is often preceded by a sensation of warmth, nausea, lightheadedness and visual "grayout." If the syncope is prolonged, it can trigger a seizure. Placing the person in a reclining position will restore blood flow and consciousness and end the seizure. If EKG and cardiac tests are normal, the person will undergo a tilt test. The blood pressure and heart rate will be measured while lying down on a board and after the board is tilted up. Someone who has NMS will usually faint during the tilt, due to the rapid drop in blood pressure and heart rate. As soon as the person is placed on his or her back again, blood flow and consciousness are restored. To help prevent syncope, people with NMS should be on a high-salt diet and drink plenty of fluids to avoid dehydration and maintain blood volume. They should watch for the warning signs of fainting ? dizziness, nausea and sweaty palms ? and sit or lie down if they feel the warning signs. Some people also may need medication." I wouldn't put money on the "more common in children and young adults", though. I wasn't dx'd until 40+. Prior to dx, I had been doing 'accomodating behaviors' such as squatting while shopping, etc.

Bella- Is it possible for someone to put a filter on your primary tap? Brita, Pur, and Culligan all make faucet filters which screw on a regular kitchen faucet. Here is the Amazon link to kitchen faucet filters. The Culligan has the best rating for longevity and ease of use. None of the filters will eliminate all lead but will reduce exposure. Pur and Brita also make pitchers with filters built in. Whether or not your lead level is in the 'level of concern' or not, it is a really really good idea to reduce your exposure to it. hope your puppy is doing well, noreen

One of the hardest things is what level of lead is actually safe. No national level of concern exists for adults but generally labs use 25 ug/dL as a level of concern (versus 10 ug/dL as poisoning for children - that level was 20 ug/dL 10 yrs ago) No level is considered safe but we all are exposed and have some present in our bodies. As mentioned the human body uses lead as if it were calcium and stores it in bone for future use. Calcium is needed for many many bodily functions in addition to building bones and teeth. Your doctor may have ordered a zinc protoporphyrin (ZPP) test which, in adults, serves as an indicator of average lead exposure. Essentially there is no black and white answer as to what to do at each level. Lead poisoning has not been associated with PoTS. While there have been correlations made with lead poisoning/exposure and fibromyalgia / CFS, nothing has been proved. Since calcium is used by the body for blood clotting, nerve impulse transmission, muscle contraction, enzyme regulation, and membrane permeability, any lead in the body will be used via the same pathways with obviously different results. The only thing we can do is ensure adequate calcium, vitamin D, and Vitamin C intake along with possibly increased zinc.

I have had a measure of success with entymotic ear plugs. They were originally designed for musicians and their crews to protect them from the constant high decibels their occupation entails. Here's the Amazon link - etymotic ear plugs. I ordered mine directly from the company a while back and they came with a little case that I clip to the outside of my purse. They do not eliminate all sound - they turn down the volume thereby helping those of us with overly sensitive neurological systems. As you'll note under Amazon customer reviews, someone with a brain injury termed them life saving. hope something helps, noreen

Hi Bella- Don't be surprised if your doctor will only order blood lead testing - many insurance companies will not pay for hair testing. Blood lead tests show current exposure to the heavy metal. Lead is older plumbing and the solder used to install it. You can have different results from different sinks in your home. If you are on municipal water they should be testing for it but sometimes the material they use to prevent corrosion in delivery lines can actually increase the lead level in water - this is what happened in Washington DC a few years back. A water filter installed on your primary faucet would do a lot to reduce your lead exposure. Brita, Pur, and Culligan all sell easily installed faucet adaptors which filter out the lead. There are many, many, many sources of lead in our modern environment. The researchers in the field often preface their remarks with "we live in a leaded world." Lead is a heavy metal found on the table of elements so it does not just 'go away'. It is found in paint and the materials painted or finished- that is it is still in the wood even after stripping or remediation - it has just been reduced to more acceptable levels. The most common source of lead is house dust and dust caused by home remodeling projects. Were any older surfaces disturbed when your wheelchair ramp was recently installed? Surfaces exposed to friction wear such as door jambs and windows are often the culprit. If the renovation work was not properly sectioned off through plastic sheets and the remaining minute debris cleaned with a hepa vacuum, lead could be tracked throughout the home and reside on the floors where our pets spend the majority of their time. It only takes a speck of pure lead to cause symptoms. Additionally since lead was used as an additive in gasoline in the United States until the 1970s, it is still found in abundance along older established highways. That is one of the reasons to wipe your feet prior to entering the house or to remove your shoes. Those of us alive prior to the gasoline lead ban have lead in our bones as the body treats ingested lead like calcium. This is a major reason that both women and men of a certain age should take calcium supplements so that the lead is not taken from your bone as your body needs calcium and then you have a secondary onslaught of the perils of lead. In NYS, high lead levels have been found in retired hair dressers as lead was used in hair coloring agents during their career. Lead is still used in gasoline on farms and in aviation fuel. Lead causes high blood pressure and stress increases the uptake of lead. Most psychiatric facilities order lead tests after a Boston psychiatrist found an extraordinarily high percentage of patients exposed to lead - Many of his patients lived near bridges and lead is still used in marine paint applications. The sources of lead poisoning I've heard about and seen documented is in the hundreds - bathtubs, lollipops, candles, bullets, syrup manufacturing, venetian blinds, cosmetics, in addition to the home paint and plumbing and occupational exposures. In addition to its use as a paint additive and solder, lead is used as a plastic stabilizer which is why some water hoses are marked as Do Not Drink. I am sure that is more than you wanted to know about lead. I have been tested for heavy metals 3 or 4 times over the past few years as the doctors don't know what is causing symptoms. Any questions, Bella, feel free to ask. As you remember, I use to work on health education for the state lead poisoning prevention program. Here's a link to a pamphlet prepared for health care providers - Lead Exposure in Adults - A Guide for Health Care Providers noreen

" Part of me knows that relationships take work and that you have to adjust to each others habits and schedules. But the other part says he's gonna be more stress in my life that I really don't need. I could use some advice." Thanks Chrissy. Chrissy- If he was sitting playing on the computer while you did cleaning and organizing, I am of the opinion he is going to be a lot of work and a lot of stress. Why didn't he help cook dinner and then he wouldn't have to complain (BTW as a guest, he should have had just a little of whatever, a piece of bread and kept his mouth shut - there is no reason you and your mom should have been tryng to cater to him). He hasn't grown up yet and does not seem ready to take care of himself fully - you don't owe him constant entertainment, custom meals and a constant sunny smile. His IMing your mom is just another indication that he is not ready for an adult relationship. ((hugs))

I sleep propped up at about a 30-35% angle. This has reduced the number of episodes I have that are similar but not identical to yours. Hope you find something that works. Sleep deprivation makes everything worse. Just curious, have you had a sleep study?