Why am i feeling like I am living in the Artic?

[jillydabrat]

If you would see me now you would laugh your socks off. I have fingerless gloves on, a shawl around my shoulders and a blanket across my knees. I keep going through stages of feeling freezing cold to the point I often have to go and lie in bed with a duvet over me. This on top of my horrendous bone pain is making life a complete misery and I am teary every day now. I have been referred to the pain clinic but they can't see me till August. I felt so bad today I phoned the pain clinic and asked to be put on the cancellation list, anything to get some help. I am keeping my husband awake at night as I keep waking up and sitting on the edge of the bed because of the pain. I am really down and really don't feel life has much to offer at the moment which makes me feel so ashamed as so many are in worse situations than me. Does anybody else with PV or on Hydroxy have these cold episodes. My fingers and toes are like blocks of ice and I feel like I have a block of ice inside my body I am that cold. Would love to know if anybody has this problem and how they are coping. Thanks my MPN Family,

Jill

[Aime]

Hi Jilly so sorry to hear of your issues. I have PV and do have body temperature control problems and can have freezing feet on a hot day or my whole body can be roasting on a cold day but not as bad as you are suffering.

I think it is ridiculous you cannot have an appointment at the pain clinic until August. That amount of pain should be getting sorted! If you don't get any joy with a cancellation very soon I would be tempted to present at A&E if your GP won't hurry things up either. I'm not surprised you're tearful.

Please see your GP and if no luck there I would ask for an urgent appointment at pain clinic and perhaps with your haematologist too. If you are told you can't have these appointments I would sit on the doorstep of A&E until they do something!

Keep in touch, sending loads of big E hugs and thinking about you. Aime xx😺😺

[jillydabrat in reply to Aime]

Hi Aime, I asked my consultant Haemo to try and expedite my appointment but she has forgot. I had a copy of the letter she sent to my GP and what a joke. It said I was on 1mg of hydroxy instead of 1000mg and that "should her pain persist I will refer her back to the surgical team following her bowel surgery". I have never had bowel surgery. Comical isn't it

[bordeauxgirl in reply to jillydabrat]

Hi Jilly, That is definitely not comical, downright disgraceful I think. If the 'haemo' doctor can get things that wrong ask for a referral to another hospital/ consultant. To get so many things wrong about you is just incredible. I feel for you really I do.

I too suffer from fluctuations in temperature and it is not nice. I can't offer any solutions but wish you to know this story. I just can't get to sleep because I am so hot. All winter I have my windows open. I throw off my PJ's during the night but my feet are like yours 'ice blocks' so I wear a pair of those soft fluffy socks at night, then I find myself stark naked on top of the duvet. My husband's comments are. 'Well at least we will never be burgled they will take one look at you and flee'. I hope this has lightened your evening and made you laugh.

You are not alone, good luck in finding help. June.xx

[fannetastic]

Hi Jill. Although I am at present unclassified I too have these horrendous episodes of freezing ice cold episodes, next minute I will be roasting, my heart is pounding and feel sick. So go from ice cold its actually painful and cant get a heat to switching fan on by the bed. This can happen all in a space of an hour. Yes bone pain is so debilitating and is something you cant explain to anyone. Like yourself I am demented most of the time. I have attended a pain clinic twice and to be honest I have not had much joy. As Aime said, make someone listen, present yourself at A&E. I know that should not be necessary but sometimes needs must and you are clearly at the end of your tether. Know that your fellow MPNs here are rooting for you and no matter how miserable you feel life still has so much to offer. Tomorrow is another day. Don't feel ashamed either, you are obviously very upset this evening and there is nothing to be ashamed off, we all have days when it gets a bit much. Much love and a Huggle.

Anne

[Tinkerbell13]

You are one brave lady and can realise a bit just how bad the pain must be, because you are no way a complainer....agree with the others, to go to A&E if you can't get that appointment urgently - and be a bit 'assertive' and persistent, but obviously in the nicest possible way, as the medics work incredibly hard and often for too long hours, but our experience is they really do respond to genuinely needy patients. Please keep us in the picture how you do...love from Tinkerbell13

[Inca]

Agree with every one else,mistakes are not amusing and should not happen,but they do.

Come on Jilly ,you are strong and brave,look what you have just achieved,soon you will feel better,we all know the horrid things that we feel,even the medics do not understand....chin up ,keep going ,Best wishes and thinking of you .Sallyxx

Ps,feeling about 90myself as well,aches and pains....why?don't know,keep going off to sleep!!!Blame the ghastly weather here just now.

[JosephVidmar]

Usually now I wake up in a pool of sweat and my feet feel like frozen ice. Wearing 2 pairs of socks at night because the sweat on the feet produce a chill. Better to put bare feet under a folded/crumpled up blanket. Sometimes sitting up helps.

My thermoregulator is off too. Particularly react to air conditioning. Hot and humid countries like HK and Taiwan have AC down to freezing levels in stores, public transportation, hospitals, and inside hospital rooms you cannot turn off.

I checked into the Cancer Ward at huge hospital here for all the tests to get my cancer diagnosis sorted out (still a murky, vague catch all dx called Chronic Lymphoprolifera). The room had not been heated in 50 years. They don't have heating in Taiwan. It was never cold before. When they want the air to move, they turn the AC on to colder than the outside. They do this everywhere.

I paid for a private room so I could turn off the AC. Didn't work. The chill AC air from the ward came in from under the door. I tried to open the window so I could get some fresh air, but a "safety" screw would let it open only 1 inch. The water was standing in the tiny toilet and the floor had not been dry for 50 years. The room was humid and cold.

My wife went out and bought some electric portable heaters. I was dressed like for the North Pole. Everybody else was in short sleeves. They were uncomfortable in the heat of the room and couldn't understand why somebody could not adapt to the temperature. The head doctor said maybe I could not do their tests because I could not tolerate how cold the rooms are.

Oddly, I could be outside in the natural air and usually have no problem at all.

Checked out of that cold hospital room as soon as possible. After 4 days I could see they were just fishing. They were just throwing all their tests at me to see what would show up on their computer. There was no strategy to it at all.

Supposedly the thermoregulatory system is regulated by the hypothalamus so the problem should be somehow connected.

Jill darling, have you tried an infra-red heater to see if it helps? Sometimes, it has for me.

Wish I could think of more alternatives to try for both our sakes.

Best Wishes Brave Soul

Joseph

[Kelly2]

Hi Jill

My late mother also felt as if “cold water ran on her back” as she was telling me but I did not realize it was from Hydroxy!