[debatat]

Hi

I was wondering if anyone else has this and or if they have found any ways to help.

I have lupus, raynauds and sticky blood. I take aspirin and started plaquenil a week ago. I am flaring at the mo but my major problem is my raynauds or what I assume to be raynauds.

I get the colour changes, mostly white and red, blue/black only occasionally. If I go out in the cold, even though well layered after a while, even though I dont feel cold, I lose all use of one hand. The fingers wont move and are curled, they wont straighten, move etc. I also stumble as I cant walk or move. My brain wont work I cant think or function. It is like my body is shutting down. When I get home the pain is agonising it reduces me to tears, but the loss of function can take days to return. Also I have had to stop driving as I cant feel the pedals and think I am applying pressure but am not. My fingertips have been numb for months causing problems with pin machines and keyboards, writing etc.

I am afraid to go out now! I did mention this at my london bridge appt and he did say how cold my hands and feet were and how I have blotchy rashes showing poor blood flow, but he has written to gp saying mild raynauds.? Does this mean what I am experiencing is something else or am I missing something? This winter I have had chilblains for the first time. I have a gp appt next week to discuss this(raynauds), as it is severly impacting my life.

Sorry for long post, also to say dont smoke, have decaf coffee, and have tried websites on raynauds. Also searched the site for old threads but couldnt find one where someone had similar to me.

Would be grateful for any help.

Deb

 

[Fairy]

Hiya,

I have raynauds too. I get the entirely numb hands and feet, so I lose the dexterity in my fingers, and I'm a lot more likely to trip on things. This can happen whilst the rest of me doesn't feel cold - I was at the hospital last week and they were trying to get a canula into my hand, they couldn't because my hands were freezing so they had to give me a heating blanket even though the rest of me was boiling! I don't get the curled fingers from raynauds though (I do from lupus arthritis), so I can't really help you with that one.

The best thing I've found is to try and not let them get so cold in the first place (I know, it's a lot easier said than done!) I wear layers of gloves (final layer being a pair of mittens) and ugg boots (expensive but worth it). And I also have heatbands for when I know I'll be outside for a while - they're one-use only strips that go round your wrists, and are recommended by the Raynauds Association. I was a bit dubious at first, and you look like a bit of a numpty but I found they made a difference to me. Also, try and warm your hands/feet up slowly, as the pain is easier that way.

You can also speak to your GP/rheumy about drugs you can try - I don't know much about those though, because they tend to lower your blood pressure and mine is low enough as it is, so I've resisted so far.

Hope that helps a little :hehe:

 

[Marshmellow]

Hello

I’ve suffered with Raynaud's for 6 years and think I’ve tried most of the treatments available-heated gloves, hand warmers, circulatory drugs such as amlodipine , illoprost infusions, soothing skin creams…and still I suffer!!

But definately speak to your GP as there are lots of possible remedies availble it's just a case of trying them and see if they help

Rachel

 

[peonyprincess]

Allow me to raise my blue tinted fingers in the air to the Raynauds problem. I have found that I do well with wearing gloves to bed, as well as socks. Seems my husband doesn't like having my chilly toes on his legs. Hmpf. I keep gloves on my truck, in my purse and oh yes, I have a wonderful heating blanket as well as a heating pad. It is very frustrating in dealing with frosty fingers all the time and of course the pain can be unbearable. As a last ditch effort, I will take pain pills in conjunction with my pain patch. I also take Cymbalta, Lyrica and Keppra to help with the pain. As for crooked fingers, that sounds like Rheumatoid Arthritis.


Good luck,
Nancy

 

[cad]

Hi there,
I have raynauds too and deal with all the normal effects of this as you ahve all describe.
I just try to keep warm, always wear gloves, fluffy sock and warm boots etc. Sleep with a fluffy dressing gown and fleece blanket in this type of whether. I ahve the pain and numbness as others have descibed too. I also get terrible cuts on y hands whe the weather is really cold due to the skin carcking, this is awful.
I was just slightly concerned about what you ahd said about some of te other symptoms you described when being in the cold.
When I was diagnosed I had a series of test to look for cryoglobulins, which show changes in th ebody relating to temperature the blood is kept at 37 degrees and then cooled and if positive certain proteins are produced. My test was negative but actually I don't think it was done properly anyway as it is very important that the viles are warmed before taking the blood and then it is stored in a warm box at body temp.
I don't want to freak you out, but maybe its worth paying closer attention to these symptoms and then going back to your doc and talking with them about this.

I also think that the curving of your fingers is not realted to the raynauds if it is there all the time.

http://en.wikipedia.org/wiki/Cryoglobulinemia

http://hcvadvocate.org/hepatitis/factsheets_pdf/cryo.pdf

The above links give more info, lease ignore the references to Hepattits c in the second one, this condition can just commonly occur in people with the virus.

Good luck.

Take Care

Cassie

 

[x_claire_x]

Blue fingers

Hiya.. yep I get the white fingers hands toes, then blue then red... it is fascinating having a bath when I think I am quite warm and see the hands and toes turn blue as the deoxygenated blood returns to my extremities!
I have invested in heated sole pads for my walking boots which are ok, not snuggly warm but takes the chill off and stops my toes being like lumps of numb ice... I tried battery operated gloves but still they weren't warm enough, gonna try some ski ones next that have an adjustable thermostat in them... I find if my core temperature drops my extremities are worse so keep lots of layers on and a hat (which I hate... not a hat person..:lol: )
The curling of fingers doesn't appear to be typical raynauds but I did get that in the mornings before I was diagnosed with MCTD... might need to go back to Rheumy and be very specific.. keep a diary of events before your appointment in a very descriptive way! Keep trying for a proper answer, you obviously have a lot of pain with the cold.
Look after yourself Deb.
X Claire

 

[Lily]

Hi Deb,

You have some good suggestions about dealing with the Raynauds symptoms, but I just wanted to chime in and say the curling of the fingers does not fit the typical Raynauds profile. I would address that with your Rheumy at your nearest possible convenience. Likewise the lack of function that lasts for days. Raynauds typically subsides once the hands/feet are warmed up slowly. Avoid plunging them into hot water to alleviate the problem as it only damages the blood vessels even more and the potential to make the problem much much worse exists.

For severe Raynauds there are meds that can help with the blood vessel spasms. The other issues may not be related to Raynauds at all. But if they are then you definitely need to be on meds for it.

Stay warm,

love
Lily

 

[debatat]

Hi all

Thank you all for your responses, they have been very helpful. When I go to see gp next week I am going to be very specific about how this affects me. It was one of my earliest symptoms the hand curling, but it has got so much worse. Trouble is I have a lot of "weird" symptoms and they never seem to know what to do about it!!! I ahve tried nifedipine but that didnt help, and I tend to have low bp and pass out due to vasovagal quite abit so am reluctant to try something that will lower my bp. The only thing that has ever fixed it was steroids, but they refuse to prescribe them for me now as I suffered a lot of side effects.

Fairy, Nancy, Claire and Rachel I have just sent for some info from the Raynauds assoc I will look out for those bands, heated gloves, etc!!! It makes my sheepskin gloves and thermal socks seem very tame!!

Cassie thanks for the link the info was very interesting, funnily enough I ahve been tested for hep C!!

Lily it has been mentioned that there might be something else going on as well as lupus. Its weird it took me a long time to get a diagnosis and yet I sill have wierd and wonderful unexplained symptoms. Guess it is something I will have to get used to!!

Thanks again for replying, I will let you know how I get on at docs !

Deb

 

[quiet]

HI
I have raynuads as well and my hands go numb and white before changing colour as they warm up. I can end up nearly in tears if my hands get that cold. it affect my toes as well.
I found gel hand warmers to be really good. I use them for when I take the dog out.
I think my doctor said once that if it was that bad there was medication I could take but he didn't say what is was.

quiet