Sick and cold

SusiM

Is anyone else freezing cold? The circulation in my feet is so poor l think they might turn blue. Im ridddled with cold sores, feeling achey and altogether rundown and sick. Are these 'normal' symptoms of RA? If so this disease is the pits:(

stickywicket

I don't think this is anything to do with RA. It's all too easy for us to blame the disease or the meds for anything that goes wrong
. Maybe you should see your GP.

SusiM

I saw told my GP and he cant find anything so he said its prob the meds but these symptoms started before the meds. They started together with the increase of my RA symptoms so l just assumed its from the disease. My temp is low - 36 and under and lve been like this for over a month. Its harder to tolerate than the pain. Maybe l have another illness. Nothings showing on my bloods. I cant believe what a nosedive my health has taken. Id love to see a holistic practitioner but theyre so darn expensive.

dreamdaisy

I wonder if you knew what your 'normal' body temperature was before you were diagnosed? In my experience those with good health never do because they don't need to. My husband is firmly wedded to the nonsense that it's 37. Twerp.

I established my 'normal' a good few years ago now because I understood the need to know before I began the serious medications (I apologise for not counting meth in that group, after so many years it's as banal as they come). I vary between 35.7 and 36.2, anything above the latter constitutes a temperature for me but not usually to anyone else until I explain what my normal range is. Even then it's hard because people who know little but think they know lots have this entrenched idea that body temperature is 37, end of. Idiots.

Despite the apparently low body temperature I sweat, all day, every day. I run hot and would love to feel cold. On the rare occasions I do I don a very light linen cardigan because within 30 seconds or so I'm back to a red-faced melting lump. I know why this is happening, it's connected to my fibromyalgia and it's frustrating but I drip on.

I saw some alternative 'professionals' before I was diagnosed and they were an utter waste of space, time and my money. Each one failed to explain why my left knee was the size of was and all of their 'treatments' did nothing to sort it, like Topsy it carries on growing. These quacks are for the worried well, not the worried with something actually wrong.

You are under a great deal of stress at the moment which I think is the explanation for what you are feeling. You are confronting the fact that your body is just as faulty as everyone else's has the ability to be but you're has had the affrontery to turn on you. How very dare it. DD

SusiM

Hi DD
That must be difficult dealing with the sweats and being hot all the time. Its the opposite to me. Ive always tended to feel on the cold side but this is different. My normal body temp is 36.7 so 36 is making me feel very chilly and unwell.
So you think the alternative health people are quacks -haha. Good to know and l dont have the money for them anyway. Its just that the GP has very limited time to figure out whats going on. Hes doing his best but the system isnt set up for people with conditions left of centre. Oh well soldier on l guess.

dreamdaisy

I don't think they are, I know they are. Reading the quackery ads at the back of the tabloid press is a great source concern as they prey upon the fears of those who are vulnerable with pain. The carefully worded, nebulous promises are an education in themselves in the art of the con merchant. My Ma was a great one for them, motivated by guilt for what she and my Pa had brought about in me. I had a far better understanding of what the root cause was than she ever mastered, for her the immune system was a good thing because it made you better: the fact it could also make you ill was beyond her grasp. My favourite quack is Ian Botham drivelling on about the 'benefits' of his Revitive: a few grand in the bank also helps one to feel good, I know it does me.

People are scared of illness, fearful of pain, annoyed by something they took completely for granted vanishing before their eyes. There's an old Persian proverb which runs something like 'Health is the crown on a well man's head but only a sick man can see it.

My favourite adage is one I saw on a greetings card over thirty years ago, it's completely irrelevant but always makes me smile and pause for thought: never try to teach a pig to sing, it wastes your time and annoys the pig. When I'm struggling with a task I ask myself 'Am I teaching a pig to sing?' If the answer is yes then I take a break!

As for you stay warm (it's easier to warm up than cool down). Get your mohair vest on and carry round a hot water bottle or even stay in bed under a 15 got duvet. Give yourself permission to take a day off, drink tea and watch cruddy TV. It's all part of learning to cope, to manage, to deal with the dross that life is throwing at you. DD

SusiM

That is true to a fault DD "health on a man is like a crown only the sick can see". Ive been noticing adds on tv portray everyone as free and happy and healthy - coz thats what sells. It feels like lve suddenly landed on the other side of the fence and lm noticing the healthy side more than l ever did.

I sorta fell for the Revitive....especially with my circulation being so bad. Ive also been known to be a bit of a sucker for vitamin supplements but l cant say theyve ever made a noticeable difference. Im starting to rethink my belief in these gimmicks now that l know how desperate you can feel and what easy prey that makes you.

Haha - love the 'never teach a pig to sing' one. How very true and what suitable advice.

You're so very strong DD having battled illness all your life. Most people havent seen a smidgen of the pain you have lived. But you sound like an interesting character and l bet youre suffering has something to do with that. Not that you wouldnt give up the suffering along with the character. God bless your parents for the sadness they must have felt over your illness and for striving to try and make you better.

stickywicket

Just a few thoughts.

I've been re-reading your previous threads. I hadn't realised that you were only taking plaquenil (hydroxychloroquine) in DMARDS and you've only been taking it for a few weeks. Plaquenil is very mild and is probably not controlling your RA. Maybe you should get in contact with your rheumatology helpline people. You might need something stronger.

I still think cold feet, cold sores etc are unlikely to be caused by RA. Has your rheumatologist or GP checked for thyroid problems? They can sometimes be autoimmune in origin.

You said that you couldn't be menopausal but are only 44. So is that all done and dusted? If you are on HRT treatment that's also a potential cause of problems / interactions.

Also, in view of what you've written today, I'm wondering if you are taking any dietary supplements or herbal 'meds'. They can interact both with our prescribed meds and with each other. If you are taking anything - even vitamins - I suggest you check with the pharmacist at your local chemist's to ensure there is nothing that either clashes or takes you into overdose territory. It's easily done.

SusiM

Thanks so much for your advice SW. Im hoping when the plaquenil kicks in it goes away. Maybe youre right and l will need something stronger. Ive always been prone to bad flu and think l have a sensitivity to it. My thyroid has been checked and not showing anything but then neither did my inflammatory markers where all the symptoms suggest RA. My doc has run every test he can think of. I wonder if some tests are not run because of cost. Its frustrating when bloods dont tell you what theyre supposed to. We dont have an arthritis helpline here in Australia. I have to wait 6 weeks to see the rheum. I was able to call her and she advised l stop taking the meds for now but she cant give me an alternative until l see her. Thats the frustrating part of this disease - everything takes so long. I hope to see better days soon. Thanks again.

SusiM

SW you mentioned a helpline. Do you call them when things arent working? Can they change your medications? I dont have that option here in australia. I have to wait another 6 weeks until my next rheum appointment. Its chunks of wasted time. I can phone the rheum and she can advise me to alter my meds but not switch me to different ones. Arrrgghhh this is like 'teaching a pig to sing'

stickywicket

Bloods tell you exactly what they test for but, obviously, they will only test for whatever might be affected. Sometimes it's more a matter of ruling things out than getting a firm diagnosis.

Ideally, here in UK every rheumatology department has a Helpline which we can ring if we have a problem but, with all the cuts, many no longer exists or exists only one or two days per week. They are supposed to be staffed by trained rheumatology nurses but, again, that's not necessarily the case. As for rheumatology appointments, I get one per year but mine's very stable these days.

dreamdaisy

Ye gods, you're in Australia? Strewth mate, no wonder you're cold, it's winter.

I have no idea what the medical protocols are in Australia so won't offer anymore opinions on what your doctor should be doing (yup, pig singing). Given the choice I would never have been born but I was and have to make the best of the poisoned chalice. My mother did feel guilty and often bleated that I was so much wanted and loved it made no sense. She wasn't to know what she was doing but I had a clue of what could be and not once did she complain about the lack of grandchildren. She taught me to carry on, that ill-health was no excuse for bad manners and to be informed. Pa's contributions were more fun and useful: a terrific sense of humour and Iove of puzzles.

I am not a warrior, a fighter or any of that guff. I have what I have and, as I see things, can either make the best of it or be a pain in the backside. The former is the better option, much harder work at times but people like me because I show an interest in them and don't whinge on although I think there are grounds to do so. I am so much more than my cruddy body and my disease. DD