April 14, 2013 at 5:44 pm #3958
Who else gets very bad muscle aches ,like a scrumping in the legs , and a headache that basically knocks you down to the point you can not think or concentrate? And a heart beat goes from normal to very fast . All my Dr. says : you have Raynoud’s .And I feel that , I dont have the same symptoms , my hands goes numb and cold -no matter if it is cold or not .April 26, 2013 at 5:27 pm #3971
well 12 days went by and no one have answered to my question …
I guess this is wrong place for finding out what other problems comes with this phenomenon .April 29, 2013 at 4:58 am #3972SarahModerator
It sounds like you have more than primary Raynaud’s from your symptoms. I would advise being examined by a rheumatologist who is the specialist for Raynaud’s. You may need medication to control Raynaud’s symptoms.April 29, 2013 at 12:52 pm #3973
Thank you , Sarah for your advise .
I will find rheumatologist in my aria and will go from there . I am on amlodipine 2.5mg. and dont seams to have any difference .
Not giving up , Natasha .June 9, 2013 at 9:59 am #4101BernieParticipant
My daughter Madeleine, who is 15 and was diagnosed just before she turned 14 suffers from aches and pains in her legs and in her arms, mainly below the elbow. Her fingers, knuckles and wrists turn blue and when the pain is at it’s worse, she can feel the blood pulsing in her veins. You mentioned that you have been having headaches and pains in your chest, is this also connected to the Raynaud’s does anyone know? Maddie has been lately complaining of headaches and a dull ache in her chest. I just put it down to hormones etc. We have been having routine blood tests to rule out anything else and it has been suggested that she see a rheumatologist here in Australia. Trying to get as much information as I can on the topic, not to overwhelm or to overload but to better inform myself and Maddie that she is normal and what she is experiencing is not in her head…June 9, 2013 at 12:19 pm #4103
I am 42 now and it all started almost a year ago . Out of nowhere , I had a complete break down, beginning with my leg and a head . Doctor sent me to ER . They discovered very low potassium levels in my blood . And after a week they tell me that I have Mononucleosis !!! WOW , really ? How did I get that ??? OK , so I wait till this Mono settles in and await for getting better . Had no energy , sleep alot , continue to be in same pain … Doctor visit . Now I have Vertigo, High blood pressure and Raynaud’s .
they give me Almodipine 2.5 mg , that is supposed to lower the blood pressure and so relive the pressure on the veins which will open up the vessels and give more blood flow to the eternities. ( this is how I understand it).
Two months later and with weight loss of 20 pounds , after numerous more blood works , and some other tests ( brain scan , z-rays , EKG machine ,leaver ultrasound etc.) I now have been given another diagnosis . Chronic fatigue syndrome and given some antidepressants ( to help with coping and ,Like dr says get rid of stuff that is “in my head”). YAY . But all the problems are still here . Now it is summer , and temperature way up there ( I live in Arizona) and I am still having this cold and achy arms , my feet all cold , and my internal (body) temperature variates from 97.2 to 99.8 (Fahrenheit) with in an hour . So I am still here , and will see my doctor in July . And we have to see what is the next step.
So , I will say , your daughter dont have “in her head” things . It is a real situation and she needs help . I know how it feels when my body doing things to me , and all people around say , just get over it , you are fine .
Do all the things that help ease the discomfort of Raynaud’s , but please do “bug” your doctor to see if there is another , underlined issue . I thought it is my age catching up with me !!! But she is only a teen. I so feel for her . With all the warmth that I have I give your little girl a hug , hope this helps . At this time I dont have anything else to add , but if I do find anything new that helps I will share with you .
Natasha.June 12, 2013 at 9:31 am #4120BernieParticipant
Thank you for your reply and for sharing your story with me. Bizarre sometimes that something like Raynaud’s can control and affect a person’s life. Thinking back, Maddie was affected by it at an early age, we just didn’t have a name for what she was feeling at the time until her hands turned blue. Some days, like yesterday it rules her whole day and her mood swings are worse, when added with pain and teenage hormones. Maddie is slowly working out what affects her and how to manage the pain while at school. She is a typical teenage girl, dressing warmly sometimes is ‘so not cool’ but she is working it out that pain free is better than ‘being cool’ sometimes. Although Maddie doesn’t like the feeling of too many clothes as she feels her body is overheating and burning from the inside.
I hope you find relief and support with what is going on with your body. I can’t imagine what it would be like to not only suffer from Raynaud’s but also have other health problems as well. I am 46 and get the normal aches and pains that are contributed to my age, so can only sympathise with those who struggle everyday. Here’s hoping I can help Maddie find relief where and when she can. She was pleased to know that she is not alone with her pain and the feeling that she has it all in her head. At the moment, I am being told that I don’t understand her pain and she is right I don’t. Initially, I thought she was putting the pain part on for attention, especially when her father was diagnosed with cancer and her older sister moved to Queensland to attend Uni. Maddie thought she was being overlooked for a while but now I know the pain was and is real. I see it in her eyes and know she struggles at school, as she is not an attention seeking young girl.
Here’s hoping the winter here is a fast one, though I don’t like our chances as the cold is well and truly set in to stay a while…
Once again I thank you for your support, thoughts and information to help my baby girl. Maddie also says thankyou.
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