I am a new member. I came here seeking support and advice from fibro parents. I’ve been diagnosed with fibromyalgia three years ago after many years of tests and doctors. I finally found a great doctor but she moved too far away and I haven’t been able to find anyone to help me. Recently we’ve had severe cold weathet, to the point where my face freezes as soon as I step outside. After my son’s holiday break it became so gruesome outside I would wake up with spasms and pain. My hands would be frozenin one place,ut would be hard to walk and function normally. Because of this my son has been late many Times in the last two weeks. His teacher threatened to talk to the principal abd take it “higher up” if he wasn’t on time. How do I explain to her thatsome days we’ve been late because I wake up incapacitated or its so cold outside my body instantly freezes? I’m scared. Please help…
Boston FibroMom- That’s exactly what you do- explain it to them. The most important thing is to communicate. You need to make an appointment with the teacher and principal together and explain your situation. This should correct the problem.
Michael (also from cold Boston)
I agree with Michael. And, do you have anyone that can help you with taking your son to school? Or a bus route that he could join? I hope you find a solution and all works out soon. I hear the desperation in your post. Best <3
I agree with Michael too. Ask for a meeting. Explain that you have a chronic illness and need help. I know that it's really hard to admit that you need help. Are you on disability? A disability advocate may also be able to help. Check with local human service agencies and places like the United Way to find a disability advocate. For me, fibromyalgia is a part of Ehlers Danlos Syndrome. I have joint dislocations on top of the fibro issues, as well as other things. I'm lucky that my kids were through school before things got really bad for me. I've had EDS my whole life and just didn't know it. It's a connective tissue disorder that causes the body to make bad collagen. I was diagnosed with fibro first. I hope things get worked out with the school soon.
this would not be my first choice, yet if the school does not listen or try to help you or someone could homeschool your child. k12 academy is a wonderful online school. sickness and weather hardly interferes. both of my boys went through that program. they homeschooled for other reasons though. yet just a back up thought if nothing else works. praying for things to work out.
I agree with others that you should speak with your son's teacher and principal as soon as possible to explain your situation. You do not need to go into detail about the way in which you are ill just that you are ill. Hopefully, either bus or other parent that lives near you might offer to share driving to school...they do it on extreme cold days and you can take more days when weather is milder...or they just take him out of kindness of their heart!
I also would make appointment with a doctor to ask to be tested for raynaud's. I have it and even going into frozen food dept of grocery stores can turn my fingers blue. There are drugs that help and you do treat it differently than one does fibro...in fact you might be one of many who were misdiagnosed.
I also would ask if your son's school has a counselor that can assist you on how to speak to your son about your illness plus teach him to express his feelings about being late etc. He might be feeling frustrated, shame or anger at it so he needs to learn to let it out. Hopefully if there is a counselor they have had training with art therapy. It is great tool for children to let out any feelings they are having about your illness and complications due to it.
If they do not have counselor, there are many great books both authored by kids who grew up with a parent that was chronically ill or a chronically ill parent who raised kids. Usually they have not only great ideas but places to get support for both you and your children.
Lastly, there are now even clothing with Omni Heat, which is like having heater in your coat or jacket and some pants!! Plus, the hand and feet warmers are a must and get the best insulated, comfortable winter boots you can afford!! The more insulation, warmer you feet will be!! Keep hand warmers and extra gloves and mittens in all your favorite coats or jacket pockets so you always have a pair plus means to warm your hands. Get hats that cover your cheeks plus wear scarf around that area, those face masks would help you a great deal along with a scarf over it all.
You just have to take extra 15 minutes getting all this stuff on and taking it off so plan your time accordingly ...are you able to keep your house warm enough too? it kind of sounds like your house is cold in the morning which causing the problems with your body...is there a means to which you can warm it up or even main room you are in? Program heater to go on good hour before you get up so house is warm completely.
I sincerely hope you and really think you will find a solution...i bet there is a parent who would not mind driving him for you in the morning and maybe you pick them up in the afternoon?!! I have had arthritis along with other health problems since my late teens and it never fails to surprise me how sweet most people will be if you just ask or let them know you need a bit of help. So best of luck to both you and your son!
i also have head magnesium is great for muscle spasms...my really wonderful Internist who was my primary doctor use to tell me to eat dark chocolate for my eye twitches....it has a lot of magnesium in it lol!! best script i was ever given lol!!
I can only agree with what has already been said about communication with the school. If there’s any paperwork about your diagnosis you don’t mind sharing with them ( I know not everyone is happy to do this) and maybe some basic fibro info just in case the school isn’t particularly helpful. The school should have some sort of policy in place which helps students who have a parent that are often incapacitated or have a disability. I have often found the phrase “duty of care” slipped into a conversation about what should be happening extremely helpful. In situations where I’m asking for assistance from a public service I will often read up about what the policies are before hand so I have the knowledge to be able to stand my ground. Usually this is not needed but it gives me confidence to ask for a situation to be handled properly. Im in the U K so I cant advise you on what procedures and policies the schooling system your son is in.
So sorry you’re suffering so much from the cold. Hope things look up for you soon x
Hi im lorraine ive had fibromyalgia 4 years and yes when the weather hits it does slow you down alot . I think the best thing to do if you can is make an appointment with the school principal or even a phone call to explain whats happening they need to understand if they want proof show them your hostpital appointment cards or any evidence as proof so if you are abit late it will be ok some mornings im that stiff I cant even get out of bed so your amazing just trying to get your children to school in the first place.
The thing that the school need to understand is that you have a disability and have no right to say they are taking it higher I would make a complain about her to the principa.l if the teacher knows your ill shevshould have more understanding. If your finding it very difficult is there a school bus that can take your children to school for you or have a carer that can come and help you out in this cold weather if I was near to you I would help im in Liverpool england ifyou need me im aways here to help in the winter months im in a wheelchair so for me I get really bad but I do my best I have carers.keep fighting on and have you been on a pain management programme yet ?
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!
Most people with fibro are hypothryoid (although this often does not show up on standard thyroid tests). You would probably benefit from treatment with T3 or dessicated thyroid. You may also be hypoadrenal - this can be checked with a 24 hour saliva cortisol test.
Lowe, J. C., Garrison, R. L., Reichman, A., & Yellin, J. (1997). Triiodothyronine (T3) treatment of euthyroid fibromyalgia: a small-n replication of a double-blind placebo-controlled crossover study. Clinical Bulletin of Myofascial Therapy, 2(4), 71-88.
Hi I just used the world fibro as in she understands what I mean I wasnt say to tell that to the teacher or at the school plus ive tried everything possible and I am in a wheelchair with my condition so thequicker you can get on a pain management course the better and maybe patients wouldn't end up like me im only young and was told pain management should of been offered within the first year of my diagnosis and I would of understood it more instead of oils and pills all it has done is confined me to a life in a wheelchair and having 24 hour carers so I say to everyone please if you find you are diagnosed with fibromyalgia ask your G.P to but you on the next available pain management course or down the road you maybe in my state which is poor and depressing. 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!
I’m from freezing lake effect blizzardy Buffalo Ny… I know how you feel. I’m an fm sufferer of 20 yrs. Being sick the whole time my kids went through school,…both now in college. I feel for you as I never had help and I felt just like you did.
A lot of good comments and tips here. I agree to talk to the principle, maybe bring a drs letter explaining disabilities with fm. Maybe the principle could find a parent in your area to pick up your child while driving their own to school.
A few things I’ve recently tried as our current weather has been 2 degrees or below in the past few weeks, expecting a warm up today…
Flexeril- low dose 5mg at night . Helps sleep and stiffness.
Cuddl duds - pants and top 9.99 each at Walmart . What a find, wear them to bed, keeps your muscles warm, get up in morning, layer your clothes over them and over dress, wear scarf over face, hat & hood, mittens ( warmer then gloves) , 2 pair of socks & boots before you leave the house. Make sure car is ver preheated. It’s a lot of work but you’ll be warmer. I am now figuring out that if I am cold and stiff ( seems to be 24-7 lately) going into cold place I am in trouble.if I have to I warm ny hands and feet in very warm water before dressing to go out. That hand Warner’ packs are a good idea though.
Stretching before getting out of bed, while your under covers.
Magnesium oil- I just read up on this… Going to try it for tight muscles. Also supplement with mag helps sleep n muscular tightness.
I heat up my neck heat pack every morn in micro for my shoulders, found at tjmax. Can’t live without.
I'm so sorry you are experiencing this. Try not to be afraid - most teachers and principals are eager to speak with parents to get a feel for what that student's home life is like. If you share with them the physical challenges you are facing, maybe they have resources available that you're unaware of. Maybe there's another parent nearby that wouldn't mind picking up your son and making sure he gets safely to school on the days you are having a hard time moving.
I have been wearing footless tights to bed and under my jeans during the really cold weather. I never used to have to layer up in the winter, but this winter I finally gave in. They really do help a lot.
Im not a parent of a living at home child but the husband of a wife with Fibro. I think I would make an appointment with the principal and try to explain your situation with him/her before the teacher goes to him/her an maybe the principal will be more understanding. Let him understand the problem coming from you and not from the teacher.
I feel for you down here on the Cape, cold and persistent damp weather this year has made it almost intolerable with pain and spasms also. If your doc moved to the Cape, let me know, I need one! Other people here have suggestions. I’ve started wearing long underwear at times and roast myself at night with electric blanket.
As for school, I consulted at schools for my whole life and you shouldn’t be threatened or bullied by them. I’d talk to the director of student services about your chronic illness, set them straight, and work out some understanding. If they don’t get it, go to the principal
Thank you everyone for your suggestions. I forgot to mention in my post that this is the first winter I don’t have a car and its been brutal for me. I was doing all right until the temperate dipped below freezing and into the single digits at times. I’m an active member of the PTA so the principal knows me, but I was honestly hoping this would pass and I wouldn’t have to involve her.
I’ve considered the home school option but my son is an only child with no cousins his age, and all my friends have older children. I fear that keeping him at home will alienate him. In addition, he has severe ADHD and I honestly don’t believe taking him out of public school would be the best option for him. After the three day weekend I may ask to talk to the principal and see how it goes. However my biggest fear is that due to my condition the school may try to get child services involved. I have tried various things to help me function in the morning and sometimes I’m closer to a solution until I step out into arctic air when my toes freeze up like icicles and my hands stop working. Sometimes when I walk to the bus stop I feel as if my toes are going to break off. I’ve worn three pairs if socks and gloves at times but they still freeze, stiffen up, and cause excruciating pain. It takes everything I have not to scream and/or cry in pain.
I have attempted to find other kids that go to his school in my building but they go to private schools or other public ones in the city. I was sincerely hoping my body would just get used to this feeling but it doesn’t seem to be subsiding.
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!
I can completely understand so much of what you are experiencing from being late to dropping off my children at school, the aches and pains, agonizing spasms from the cold, the Reynauds, missing work, and trying to find something that works that insurance will cover. So I saw mention about magnesium earlier and I just wanted to explain why it worked for some people. It is because it’s a smooth muscle relaxant but not like your typical muscle relaxers but it does help with relaxing the smooth muscles of the airways, the bowels, the uterus, not to mention so many other things. It is also used to treat restless leg syndrome and migraines. It seems only fair that it would find a use for treatment for fibro. Anyways, I’ve been diagnosed for five years now and for the majority of that time I have watched the career I love as nurse start to wither away because I can no longer work on my feet for long shits because I’m exhausted all the time; I watch my children go about their lives as I lay in bed and usually the only time I see them is if they come to say goodnight because I cannot even sit up to eat dinner with them because it causes me so much pain; I’ve watched all my friends go on with their lives; and now I’m trying to hold on to my husband as tightly as I can with both hands and praying to God he won’t go anywhere. I struggle when it gets cold or it rains between the pain and the migraines to go to the doctor to take all the fibro and pain meds that they give me or just to make it to the appointment at all sometimes. I have a job but I haven’t actually been inside my office in over a month because of infections and pain. I try but no one sees it but me anymore because I’m the only one looking. So BostonFibroMom as a parent who unfortunately has been through a lot including some of your worst fears I’m going to encourage you to do the following things:
1)reach out to your friend the principal and explain to her that you have had medical issues going on and that they will be effecting your life from here on out and that you will need the school to be understanding including the needs of your son.
2.)Seek out a good internist who can help you find a Rheumatologist and Pain Management
3) Seek out a local church that has a Stephen’s Ministry program. You do not have to be religious or part of a church, they provide you with someone to talk to and discuss what’s going on in your life similar to a therapist but this is a ministry trained person who may have been through a similar experience or had a loved one that did.
I think that’s it for me for now but I’m here if you want to talk more
Oh man so you are walking him to school and that is what is causing your pain. If you can invest in one of those Omni heat jackets...if you can they are pricey.
I can say that Sierra Traders has the heaters for your feet and hands at much reduce price than retail...these are packets you twist and they get nice and toasty warm.....and last about a hour. Those should help with your feet and hands. You can buy enough to keep some in your pockets so you have them handy without thinking.
I think it is wise to not place your child in homeschooling....plus it gives you time to rest, if you are not working all day..and than it gives him a safe place to be! By chance do you watch the TV show, 'About a Boy'..only child, with minnie driver as his single mom? might enjoy it, i do!
Only other option if you cannot find a parent to take him to school for you is take a Taxi? I know they are pricey for those of us on budgets but it might be worth it on those extreme cold days. IF you get to trust the taxi driver he could even go by himself ..if it is safe, but also do not they have a bus he can take? Is he old enough to walk on his own to bus stop? Or one of the older kids might do it if you paid them small amount?
I agree when it gets down to single digits it hurts...even in 10's it has bad nip to the air!
But best and easiest might be to speak to his teacher as they often know how each kid gets to class and what parents might be open to assisting you.
I hope you can get some of those heating pads for your hands and feet...i love them!! If you have heater or even oven...cheap way might work is to heat up some rocks...we used to do this back packing and put in our sleeping bags to keep our feet warm...would last at least hour and often through the night...just depended how cold etc. I know this sounds corny but if it works...who cares! lol! beats having frozen fingers and toes.
here is link for hand warmer...you can use in shoes as well, i do..1.25 each...not too bad!
