Winter is probably the worst for me because I have to cope with 2 extremes - the general cold temperatures and having to take care of the areas of my body that are vulnerable to the cold by applying more warmth in one form or other to to those areas (I flirt with chilblains every year and have arthritic joints), AND heating systems. I need to live on the cool side so if I want to be with people I have to cope with/negotiate bearable temperatures. This is almost impossible.
Summer is a touch easier because it is less complicated, and I have a/c in one room so I can sleep at night. I just steer clear of the heat.
I totally agree with a lot of what you said Toad. The thing that certainly is a problem is being with other people whether it's hot or cold. If it's cold and I go to someone's house they have the heating on and I end up in agony. On the other hand if it's a hot day just the same really other people can cope with the heat whereas I can't. At home I have my windows open to get a good air flow but other people don't always do that. So, what it means is that I never go anywhere to socialise.
That is something I must get on with a/c fitted. I am having equity release on my property and that's the sort of reason I need to do this so that I can afford things like that. However, I would have all the rooms with it.
Sounds like a very good use of money. The one I have also heats, if you so desire, so you could maintain an optimal temperature all year round. Of course, this doesn't take into consideration the myriad of variations that YOU would bring into the equation (how active you have been etc.) but it would make a big difference. There may well be a way of having your whole house set up with such a system. I spent a few months in Vancouver 40 years ago and the heating systems there were of a type that circulated air at ground level. Mind you, cold air sinks and warm air rises so that might not work. Portable ones tend to be noisy so the one I had fitted is fixed and very quiet, but the installation is more of a job. I sleep with it on with no problem at all. Perhaps 2 exterior units (one upstairs and one downstairs) and multiple interior ones would be fine but there would be a lot of ducting to enclose. The external units themselves are very powerful.
The type I am thinking of is the one that you have wall units for each room and I think there is an outside pump type thing. I am in a bungalow so I only have one floor to think about. I have put a photo here in the room it's on the far wall.
Yes, I will be getting the people round they are local the firm that does it only about 7 miles away! I think when I looked last time it was around £2,000 to have all my rooms done. Of course there is the running costs.
My EM is far worse in the winter. I thought it was because I had to wear shoes more. I don't have Raynauds at all. Everyone is somewhat different, so I can't believe that your nurse would think that making a "blanket" assumption would be relevant to everyone who has this disease. Stand your ground as you know your body better than she.
I flare more frequently in fall/winter. Even though we are having an insanely warm and muggy fall (mid-80s F right now), my flares seem to be picking up right on schedule - occurring as early as lunchtime when they happen only in the evenings in summer. Very frustrating.
Hi, First post for me in this forum. For me I find winter worse. What seems to precipitate my flare-ups the most are rapid temperature changes. In the summer I stay indoors for the most part, where there is A/C. Even if I go outside, the temperature difference may only be 20 degrees Fahrenheit (65F inside to 85F outside). I do get flare-ups in the summer but holding a bottle of iced water can mitigate them enough that the fare-ups become tolerable.
In the winter, I don't use my heater at all and I even keep the window by my bed open. (And I live in snowy Canada!!). When I walk outside my hands and feet rejoice (for a few minutes-- then they start to get chilly). When I go into shops or other peoples' homes, though, the heat will be on and I will be going from a 20 degree Fahrenheit environment to 75degrees or something. That's a sudden change of 55 degrees whereas in the summer indoor to outdoor is a 20 degree difference. I think that that is why my flare ups are worse in the wintertime.
I can see now why you are not as bad in summer, as you have A/C and stay indoors. So, I don't suppose you would know if you are better in summer otherwise.
I am housebound and have been for a while. The only time I go out is to hospital and then I am in a car except for a few minutes and so I don't know if a rapid change in temperature would make me worse.
Since I live in Southern California, it has been a long summer, it was 80 degrees today. It cools off at night and I leave windows and doors (we have security screens) open all night which cools down the house. It should be around 65 normally, but global warming I guess. So, winter is better for me in my personal house and going out during the day. But, when I go into someone's house that is heated it's bad. I also find stores, except grocery stores, to be too warm for me too. When visitors come to my house, I tell them to bring a sweater or they will be too cold!
I have a much harder time in the winter. The cold feels like burning .But the summer is no picnic either. Staying in my room with no change of temperature is the least painful, but pretty depressing.
I don’t think, for me, rapid changes in temperature are the reason for flaring. It seems more complicated than that given the suddenness of the switch Ron freezing to flaring. I have a virus at the moment and my daughter is home today so I stayed in bed until 9 am, only getting up because my feet became too painful. I put sandals on because we had a cold snap last night and the house was cold and my feet rapidly cooled. I have been messaging back and forward with my daughter in Australia so sitting longer than I normally would and suddenly my feet flared. No temperature change, no movement except to type and drink a cup of tea. I keep a range of sandals and flip flops in the kitchen so I can change as soon as my footwear begins to warm up as warm soles will cause a flare but bare feet can become painfully cold and the ensuing flare will hurt still more. I always end up just thinking “weird!”. I emailed my neurologist who is a gem but he had no explanation for the freeze flare behaviour of my feet hands and face in Winter. In Summer there is always a reason why I flare (eg activity, heat, spicy foods, cooking) and flares are much easier to avoid/deal with. I am very suspicious of the central heating as a trigger but my toddler grandson lives here so I have no choice but to keep the house reasonably warm.
I am just setting my sights on warmer weather. I have always hated January and February but time passes quickly and we will be seeing warmer weather once spring arrives and I can turn the heating off. Hey the sun just broke through the gloom of a British Winter. Lifts my mood no end when that happens.
My rhumatologist just told me yesterday that flare ups of em are way worse in the winter. Since this is my first winter flare, I felt the urge to strongly disagree because my summer flares were so much harder to manage. Strange how differently this disease affects people!
My mom and our family seek to control our environment. This means air conditioning in both summer and winter. With temperature conditions being the same, she has EM problems more only from warmer conditions. As she is in a cool environment all the time and is inside almost all the time summer and winter flaring are not related to the seasons at all. If she was outside in the cold, the cold environment might help her feet more because her feet were being chilled more. But she doesn't get out much. She seems to be sensitive to the sun as well, but that could be her mental conditioning and state, because she used to suffer from sun sensitivity with some drug side effects she was taking. So the more sunny days would cause her to worry more and going out on a hot day would cause her EM to flare a lot faster and quicker as we would rush for the car and AC. She would put her feet in a cold pan of water in the car or on the AC vent, when being transported. The car is cold in the summer with AC or in the winter as well, and my father and I will have to bundle up to deal with the cold in the car as well. She will also have to bundle up so her upper body doesn't catch cold as her EM and pain mostly effect her feet.
At times I've had a kind of hot pain from almost frostbite conditions in the winter in my hands if I worked my hands hard. This is a natural side effect of having the hands chilled to long and working to long, a sign of almost having frostbite. That would make a warm hand reaction indoors happen from overly chilled hands, but that is natural to normal functioning people. It has nothing to do with EM as far as I would guess.
EM always responds to heat with a flare, so if the warmer weather creates a warmer condition, your em will flare. EM is not seasonal. It has nothing to do with seasons. I suppose if my mom could find a place with 50 degree soil all the time and had a minor version of EM she would be happy outdoors walking in 50 degree sand. Her EM also doesn't like to be touched or having anything touch her feet during a flare and sometimes when she doesn't have one. She rarely gets the cold Reynolds like symptoms, but at times she may get it perhaps with a rare adjustment of the medication. Her EM is hot 98 percent of the time, and she doesn't experience numbing or cold chills as some kind of opposite reaction. That has only happened a few times. If my mom chills her feet environmentally which would be thought of as dangerous to treat her EM she can have cold and purple feet. This from serious environmental chilling like having feet in cold water for a long period of time. That will almost freeze the feet, and is a reaction to freezing the feet with an environmental change, it's not Reynolds. I would say EM or Reynolds would manifest themselves in a normal environment, when their type of flare symptom would happen. Perhaps Reynolds conditions are like "cold flares."
My mom's system is really sensitive as well. She can have a flare from internal heating of her body, for example eating just warm foods or a warm drink can trigger a flare. Because of the severe sensitivity she seems to have to warmth with her EM flares, we end up giving her both hot and cold food at the same time. Sometimes she will have chilled food or almost always cold food with the hot food to even out the temperature of the foods she is eating. Something that may warm her core, like a meal with all hot items can trigger her EM.
Her super sensitivity at times can seem to border on the extreme. Where she will complain about a lot of things as being uncomfortable. Almost like the story of the princess and the pea.
Oh my, I so glad you wrote this Nel. Me too is having the worst winter of flares. Trying to be, or trying to stay at a normal body temp is hard enough, but I have had more flares lasting hours upon hours in hands and feet this winter. I do know I have other problems to along side my EM but I am definitely struggling this winter. I am still awaiting results from biopsys took from my arms to why I have permanent livedo reticularis and to why my veins are struggling in arms and legs. More my arms starting under arm pit right down to my wrist. The swelling of veins is horrendou. my consultant in dermatology has talked about vasculitis but I still in the waiting. In the meantime I been stuck up with lidocaine patches till the infusions what my rhuemoltoligist has arranged to be done. Hope you are still smiling X X
Hello bella.
Still smiling but not when it’s the middle of a cold night,frantically overheated and shivering in the cold eating frozen yogurt to ease my burning throat. Winter is a nightmare but it’s getting lighter and the daffodils are flowering in my garden and I just fix my mind on Spring and push through it. What are the infusions you are going to have? I have very swollen veins too but not livedo poor you. I hope biopsies give them some clues. xx
