I understand being reluctant about mentioning fibro. Some people don't take it seriously enough. We know how sick it makes us feel though. My mom has it too. I mentioned before that I have Ehlers Danlos Syndrome. Most people have never heard of it so I have to explain EDS a lot. It can be hard to talk to others about health issues. My joints go clunk clunk when I move them, or they make loud cracks and pops due to the EDS. It can be noticeable. (This is NOT a fibro symptom btw so if someone experiences these symptoms looking up EDS might not hurt). i end up explaining a lot. I think explaining to the teacher and principal might help, as others have said. I know I commented already. I'm just concerned about you. Big big hugs and I hope things are figured out soon.
Waterswave my mother-in-law and I have a lot of similar symptoms but she does not have fibromyalgia but she has been unofficially diagnosed with Ehlers-Danlos Syndrome. She has the loose joints and stretchy skin and a variety of other things I’ve never heard of related to this disease process. It’s very unique and genetic. How are you treating your disease if you don’t mind me asking and how is it affecting you?
Treatment for Ehlers Danlos is difficult due to the many comorbidities. Some have an issue that causes difficulties metabolizing medication. A lot of people with EDS seem to have problems with the MTHFR gene. I haven't been tested for the MTHFR gene or had the p450 chromosome test yet. I was diagnosed at U of Michigan. They told me they "diagnose but don't treat." EDS. I had to go to their genetics department after a rheumatologist at U of M sent me there. My rheum, who was treating me for fibro and early osteoarthritis already, referred me there.
Early osteoarthritis, raynaud's joint issues, soft smooth skin (looking younger than i am is the only EDS symptom I like), gastro issues, organ prolapse, aortic dilation, mitral valve prolapse, anal prolapse, blue sclerae (whites of the eyes have a blue tint), blurry vision, headaches (can be a symptom of Chiari which is often a comorbidity of EDS), early osteoarthritis, chronic fatigue, fibromyalgia, swan neck deformity of the fingers (I have this), easy bruising, "clumsiness" (many with EDS have poor proprioception which is the awareness of the space around us, so we have poor spatial relations, this is me too), Livedo reticularis (a lacy pattern on the skin caused by blood vessels that are too stretchy and visible through the skin, I have this too), POTS or other dysautonomia issues (due to stretchy blood vessels also) Osgood-schlatter's disease (my sister has this), hiatal hernia (I've had hernias fixed, a surgical scar herniated in several places) Nerve compression disorders such as carpal tunnel and neuropathy (I have peripheral neuropathy), sleep apnea, tethered cord syndrome, high plate, gum issues, crowded teeth, TMJ, and more are all possible symptoms of EDS. I'm sure I forgot some symptoms because there are so many and each person can have any combination of them. it's a very complicated issue and is missed by most doctors because they get very little education on connective issue disorders in med school. When they do, they learn mostly about Marfan;s so they think we should all be tall and thin which isn't true. You may know all this, Angela, but I thought others might be interested. I've thought about doing a post on EDS. There is an EDS group on Ben's Friends. i belong to that too.
Mainly, my treatment consists of lots of rest, keeping hydrated. and seeing several doctors to treat the particular issues that pop up. My PCP is learning about EDS and doing their best. They refer me when they can. The rheumatologist helps because she treats the fibro and arthritis but she's also an internist who is a D.O.. If I end up in the ER or with bronchitis yet again (EDS caused weak collagen in the fascia around my lungs) she will prescribe antibiotics She and my PCP are good about working together. If she sees something in her office, she will go ahead and treat (I passed out there one day and she sent me to the ER).
They referred me to a gastro doc for the GERD and liver issues, so they treat those issues. i take a store brand of zantac twice a day and they do tests when they need to. I see a cardiologist. (He's the brother of my rheum and is great). He does a echo-cardiogram once a year to make sure I don't have a problem with mitral valve prolapse or aortic dilation. There is a history of those in my Dad's family. I've had one episode of an abnormal rhythm but it's ok now. He was concerned when I passed out during a test but thinks it was the dysautonomia. I see an allergist at U of M because I've developed so many new allergies that they think I may have a mast cell syndrome issue. I take zyrtec twice a day for that.
My PCP orders in home physical therapy occasionally. They have to be very careful because my joints dislocate multiple times a day. We have to strengthen the muscles without stretching the tendons. My joints and tendons are loose like your MIL's. I see a Physiatrist (physical/sports medicine) doctor because he knows about EDS and helps however he can. He sent me to orthotics for ring splints to help with the swan neck deformity in my fingers. I try to go places but I have to sit down a lot. I use a walker or a cane. The PT wants me to use the walker to keep stress off my joints but sometimes that's hard I'm trying to stay out of a wheelchair as long as I can. Sometimes my son does have to push me though. I can't wheel one myself. I don't lift anything at all. My sons have to do most of the cooking and cleaning.
The hardest thing for me to deal with is dislocation. My joints have clunked, popped and snapped my whole life. I had no idea that the clunking was subluxation (partial dislocation) or that some of the popping happened because joints were relocating. It happens many times a day for me. I tend to wake up with dislocated shoulders and ankles. The Physiatist told me to pop them back in, so that's what I do. I keep myself busy with the internet and books but I lie down a lot. I support my joints with pillows, and try to remember not to overextend when I reach for something.. The best thing I'e found is to try to always stay as positive as I can. I'm not sure if any of that is what you were looking for. I may have written way too much. Feel free to contact me. Big hugs to all who need one.
Hello Bostonfibromom,
I can see there is lots of very good advice on here already. How to cope with a very difficult situation, and it is! I am a teacher suffering from Fibro, also. but from UK. I would say go to class teacher/ head teacher first. Whoever you have good relationship with, and be totally honest. They should help you with a plan, I know if your son was my pupil I would go absolutely out of my way to help. Even if it means coming in late everyday. Hope this helps.
Take care, Anne
HI!
As a mom with fibro I can't tell you how many times my pain has impacted my sons in so many ways. Late homework, projects not done..you name it. The only reason they are ever on time to school is because of my husband.
As a teacher, I can tell you that this teacher you speak of really has no power to do anything. I've got students who come late 3 and 4 times a week. The attendance office is way too busy dealing with students who are constantly absent to take much notice of tardies. The worst they can do is recommend you to the School Attendance Review Board, at least here in CA. And that takes months. Usually, nothing happens and it "resets" at the beginning of the next school year.
My suggestion is that you take it to the principal yourself. If this teacher is being rude or nasty to you, let him/her know. Explain your situation. Don't feel like you are whining or looking for sympathy, because you are just stating the reality of your life. Perhaps s/he can come up with a solution with you.
As for the pain...you have my sympathies. Even though it rarely gets below 40 degrees out here I feel the cold deeply. I can't imagine what it would be like to be in that situation. For me, warm baths, the spa and my heated throw (which I wrap around me like a cocoon) help a lot!
Best to you and your kidlet!
I am really sorry. I understand the fear that comes along with this.
Simply try to have a meeting. Let them know your circumstances
And see if there are any alternatives that would work out for your son
And yourself. Unfortunately , If you don’t explain they will chalk it up to
negligence which is not the case… I hope things work out. Get back to
us and let us know how things work out.
Lisa
hi Boston,
I can relate totally to no NSAIDS...i also was on them for long term at high dosage and ate my stomach. Even the gel, voltaren which is by rx but really does work!! hurts my stomach if i used as much as my husband puts on his joints!!
You might check about this particular brand... it is looked at as NSAID only in gel form so your insurance might take it.
I have had excellent luck with TENS units...though i did get mine from Amazon not local store...they were not yet offered in stores. When my mom first got hers it was by RX only. Now i paid for my 1st one about $40..middle of the road and it had about 8 different vibrations and 3 or 4 different time lengths. It only died due to pup getting the wires! so i loved it but figuring out where to place the pads is the tricky part...read about the particular brand plus online sites in general. But it worked for both fibro muscle/nerve pain as well as my RA pain and other kinds of arthritis.
As to Voltaren gel ...your insurance might okay it since it is a NSAID just in cream/gel form. I know most everyone i have told about it ...has had good luck with their insurance paying. JUST!! use it sparingly since like me you get upset tummies from nsaids. My husband really uses it thickly but i use it sparingly and even then if i use it daily i can get upset tummy so be aware it can cause stomach problems but not if you are careful.
Other is emu oil...when i first used it in early 90's it was pricey....like 20 dollars for tiny amount now though it has come down greatly in price!! use it as often as you like ...i have had no negative but it does help a lot with my pain.
Other thing is epsom salt baths! use at least a cup in full bath many put in 2 cups ...you can add like lavender oil to the salts if you like some scent. I like it hot for fibro pain but medium to hot is good. use bubble baths to help keep tub clean...i add squirt of dish soap at end. OH i put in small amt of baby oil since i get dry skin so bad along with real bubble bath. I read in there for hour or long...while i am in there no pain usually!! even if it was horrible pain! so heat does help!!
Heating pads or throws....electric blanket on your bed...all these help and if you get pads you can apply them to specific areas where you hurt if only few places...or use throw or blanket to cover most of your body. Even those microwave things help a great deal.
I also use ice on my RA since heat can make it worse at times....so if you do have both like me...just try to pick what is worse...like fibro in back/hips but keep feet etc out of while in the bath. OH also drink when you do the epsom salt baths, like water as it dehydrates you ..so you can feel extremely thirsty depending on how long you were in and how much you used. This really works!! on one site many people wrote in with recipes they use around the epsom salts.
Lastly...though i know there are more..(check pain groups sites for new ideas as well) Fisher Wallace has something that seems similar to this other product that cost about twice as much....it is simulator and should help with pain as well as other depression and anxiety. Here is the link and i am seriously considering buying it and should i or if anyone on this site has...please say what you have as to pain or depression etc...if pain what kind and how it worked.
here is link...http://www.fisherwallace.com/
lastly....there is a fibro test ..i try to spread this because many doctors are beginning to believe that many of those diagnosed with fibro do not have it but some other disease.....even i was told i had it and i still might but i do know main pain i was worried about was from another autoimmune disease...so it could been control but many of other diseases can be stopped with as little as month's treatment!!
i hope by now you have spoken to your son's school or found a means to help him get to school That age having a teacher shame you is just so embarrassing so i really feel for both of you.
I have also tried many of otc creams for pain and so far most do not work for me....i will use tylenol still off and on and for break through pain.
I am also starting mediation ..mindful mediation since my older sister who lives in large city, works for a major hospital and has RA ...took this class for pain and the book is based on this doctor who started using it for those in severe pain at some major boston hospital and it truly has helped hundreds if not thousands of people. My sister past her book since i live too far to take the class....but i have used meditation in past and it helps as well as hypnosis...which use often without even thinking about it after these number of years.
good luck and if you know of any other pain helps...please pass them on
BostonFibroMom said:
Hello siskiya,
I was reluctant about saying I have fibro as well. I understand that pain medications have strong side effects, but unfortunately I haven't been able to take NSAID's for some years now because it upsets my stomach even in the smallest doses. They rip apart my stomach an I get so sick on them that they're not worth taking at all. If you could suggest a different class of pain medication or something I may be able to ask for I would really appreciate it. Pain gels and creams that require a prescription aren't covered under my insurance, and I've tried the patches but they don't help much unless it's surface pain. I've also heard that the TENS unit available for purchase through the drugstores isn't as effective and a waste of money. Have you had a different experience with one? If so, which one?
siskiya said:Here in the US, the school does have the right to take it 'higher' if they feel the students needs are not being met. That could be missing enough school it affects her son's lessons or other students due to the interruption of her son walking in late. BUT! i would hope that the school would work with her and i strongly believe that they will.
I am bit unsure if she should say she has fibro mainly due to so much misinformation that is out in the world. Might just be easier to say she has disability that is affected by the cold weather.
I really believe that the school will do their best to help her and her son...either he takes the bus to school or another parent picks him up on bad weather days and she can pick up both kids when weather is nicer or afternoons...sure some way can work out to make all happy.
Pain mgmt is good idea but as a person who was put on narcotics i would advise anyone considering them to do everything and anything else due to the negative side effects. Emu oil and voltaren gel (need rx for voltaren) both have helped me. Voltaren i must be cautious since it is NSAID cream and i taken NSAIDS at high doses where my stomach easily gets upset...but both truly help. TEN's units also help and you now can buy them in local drug stores!! I tried emu oil in 90's and it worked but it was so expensive and bit hard to find but now it is reasonably priced and not too hard to find...it really works! but for the cold, i find keeping those body parts covered and warm...you might try those warming creams like ben gay before going out.
There are many solutions you just need to find the right one that works for you! Sadly it does take time too but in long run it will be worth it! good luck and i am sure easy solution will happen to both you and your son!
take care
if you like the name of that book...let me know and i will supply it to you.
also where i live does get nightly below freezing..twenties but not to low as your temps in single digits...unless you experienced those, again people do not get people do not how it hurts literally.
One thing i did...was buy a long coat for having to go out on those cold nights....even though i had to save or look in 2nd hand stores. I wear couple scarves too..around neck and down plus another around my face ..nose down to protect my face skin...but sure you are doing all this...you might place them by heater before you go out to have them extra warm
i truly to get about the cold..as a kid going to Tahoe..i cry and it was only place my parents let me off hook to help same as other kids...we did not have snow clothes nor shoes and often in winter snow at cabin was over 5 ft high...so we had to dig in ...cabin was only heated by wood stove so was colder in it ...first year we did not even have plumbing yet as my parents were building it themselves...this was in 50's.
When my family heard i of all people was moving to area which has snow...not like Tahoe but snow still plus cold temp...they said i was nuts. I learned with right clothing it is not too bad....
but you really have to prepare when we have pain and cold increases it though in all honesty...been times when i hurt so bad...i went out in snow in shorts or light pants / t shirt and just laid down in snow and let my body get numb....not kidding
serve way to stop pain but it worked!! good luck and hope you do not mind the family memories of cold...i seriously now though....tell those in pain never to move in areas of severe cold....but i also know this as i have lived in hot climates, moderate ones and cold...you adjust and eventually you will still hurt..for first year though you might be in lot less pain depending if it improvement climate!
A quick note…a somewhat upgraded portable rechargeable TENS that is a band that just goes on your calf and helps pain everywhere, they say, was profiled in the Boston Globe recently. Neurometrix, they are outside Boston and hope to begin selling it ($ 250 maybe!) online in April. They aren’t doing any trials, unfortunately, I called, don’t know if insurance would pay for it or if they will offer reduced price to some. They told me they hope to get into retail OTC markets soon after and we can hope the price will come down. Also, I suspect big box or chain pharmacies would let you return it if it didn’t work, not sure if company would.
I’m going to research emu oil as I’m running out of meds and supplements to try.
Good luck.