I Hate the cold

[TJme]

My hands and feet are conspiring against me and the Lorsatan isn't working think I need to see the doc again

[thpoPe17]

Hi, my advice is to back to your gp. If you manage to get your feet or hands warm, wear thick socks warm shoes. Hands wear mittens. It's not a glamorous alternative but might help. Good luck.

[TJme in reply to thpoPe17]

This is with wearing thermal gloves I keep well wrapped up all of the time , even on the hottest days of the year I get cold , I need to see my GP and get him to refer me somewhere because I've also started getting very short of breath (he said possible lung involvement ), Problems with vitamin D levels in my blood The normal levels in an adult are expected to be 30-80 ...apparently my levels were 0.017 so I've been taking supplements , not made much of a difference to my lethargy though . Thanks for replying

[zenabb in reply to TJme]

Do you have a rheumatologist.

[TJme in reply to zenabb]

I Think I do , I've only seen him twice , the first time was when he looked at me and said you have raynauds ( that was the full extent of my diagnosis appointment ) He looked at my feet gave me a leaflet that was it , the second time was Dec 2011 when I had to have illoprost infusion as an emergency but only saw him once before the treatment never saw him again . I don't have a lot of free time so haven't even seen my doctor for the last two years

[zenabb in reply to TJme]

Arrange to see your rheumatologist at least once a year if not twice.

[zenabb]

Don't forget to cover up well, hat, gloves, scarf and all.

[TJme in reply to zenabb]

I always do Zenabb Thank you x

[thpoPe17]

Go to your GP. Get him/her to check your pulse points. Mine did and it turned out to be blocked arteries. I'm not saying that's your condition but get it checked anyway.

[creditcrunchie]

I think you have to find 'free' time for yourself. A rheumatologist is key to helping you through this and you need to sort out an appointment. Currently I am trying viagra as an alternative to having illoprost infusions which is helping on a day to day basis and for me a preferred choice against having to be a day patient for a week. Take care.

[fraxinus]

Hello, I have reynards get chillblains. Think it really helps to make sure you get plenty of fat, protein and carbs (most important), in your diet and warm foods such as chilly, ginger and garlic. Lentils,beans nuts and oils (not cooked) coconut, olive and nut oils, potatoes and roots and grains are good and vit b from marmite (I'm a veggie tho so may not relevant to you). Also don't drink too much liquid with food, and avoid too much refined sugar etc. I also think its a bit emotional and relaxing in silence is important even if you only have 5 mins! and have plenty of enjoyment wherever takes your focus of the pain as there is always something worthwhile anywhere

Hope any of this may help, I know how you feel tho as alone is how I often feel with it but have learnt to live with it most the time now, sounds like your stressed try taking up a new hobby or learn something new / socialize with new people?

Good luck xx

Reply

[TJme in reply to fraxinus]

I don't have time for hobbies ...wish I did ! My hubby is terminally ill and I am his carer. As sufferers we're told to avoid stress this is also an impossibility in my current situation , as for five minutes rest ...Oh I can dream

[missymystique]

That looks like chilblains, is that what you have been told?

[birdieca]

I made a warmer for myself by taking long grain wild rice and filling up a mens tube sock with it. Knot and place a rubber band. Use another sock on the outside as a cover. Use about 2 pounds (1kg) of rice per sock. Microwave for 2 -3 minutes and keep with you to keep you comfy for about 1-2 hours. One idea is on this site: pinterest.com/pin/112027109...

I have made several for myself and take them to bed with me or in my pockets when it is cold (use smaller socks and less rice).

But go to see your rheumy. There are medicines which may help.

[Jensue]

Go back to your GP and ask to be referred to Rheumatologist or he could do blood tests at the very least.

I have tried all sorts of medication for my Raynauds which is secondary to SSc and have now been put on Sildenafil (Viagra) which is making a difference for me.

I use sheepskin boots in the house along with wool fingerless gloves & lots of thinner layers.

[tall-tim]

If you feel your consultant isn't giving you in-depth consideration there is nothing to stop you contacting the specialist unit at the Royal Free Hospital in London and getting a second opinion. Consultants are OK about this process. and it is open to you on the NHS. You must be proactive if there is any doubt about the diagnosis and treatment you have had so far. You must make sure you get the care plan you need.

[cowhide]

Tjme, you MUST prioritise your health. You must MAKE TIME to see your GP and then get a referral to rheumy, the alternative is to lose fingers to gangrene and they will also get tests sorted to look into some of those other issues such as the lung involvement. When I was diagnosed with limited systemic sclerosis a year ago, having had Raynauds for decades, within a week I was back at my surgery with an ulcer like yours that had become infected. My GP gave me a real ticking off and told me I must take this disease seriously. Suitably humbled I am now a lot more careful. With our poor circulation it is a lot easier for those ulcers to get infected and they are a lot harder to heal than in healthy hands so preventing this has to be a priority.

[TJme in reply to cowhide]

Went to the doctors this afternoon after looking at my hands and feet ( toes are worse than fingers ) he said I have the worst case of transient isechmia hes seen in years , he has sent an urgent referral to my local rheumy and podiatrist he said I am in danger of losing two of my toes and part of my foot ...changed my meds just a waiting game til the hospital get in touch .Thanks for all the replies

[cowhide]

SO glad that you have got the help that you need although sorry the prognosis is not good. Hope it gets better for you soon. Look after yourself.

[ultima47]

My hands did that same thing last week only not as bad what are the blister bubbles mine just started that?

[TJme in reply to ultima47]

Hi Ultima47 not certain exactly what they are , I had thought they were chilblains but the Dr dismissed this , (that's how my fingers usually start to go though Chilblains that are raised painful and when my fingers warm very itchy )