[thompson3]

Hi there
I am a borderline ANA and only so since Jan this year. In March I started experiencing tingling sensations in my arms and legs at night. They feel heavy with a dull ache and when I get the night sweats, have my arms out of the duvet my arms get cold and ache like mad. So I have to put them back under the duvet and battle with the sweat until I go back to sleep. Sleep is another problem, I wake at least 3 times per night and have long periods before I drift off again. I wake up stiff and in pain. My ankles and hips are the worst in the mornings. The other day I had another of my knee pains and developed a really painful leg muscle pain which lasted just under 2 hours. I was in agony as it came on peaked and went away quite a few times in those 2 hours. Also recently everything seems to hurt much more than they used to - even giving blood samples is a nightmare now. Can't tell you much about my bloods other than low Iron (but not aneamic) and low vit D. I have just had some more tests for antibodies etc. Do you think my tingling is this anything to do with fibro? Love to hear from you.

 

[Maia]

I'm not a fibro expert by any means, but I didn't think that was a well known common symptom in fibro. Tingling can have many causes, I've had a few bouts of it myself with a lupus diagnosis followed by Lyme a few years later. I tend to think the Lyme is what set off the tingling in my legs and arms a few years ago.

I'm glad you hear you are continued to be followed up on with more blood tests looking for additional antibodies and a reason for your symptoms. You certainly have some symptoms that are consistent with an autoimmune disease, I hope you get some answers and the right treatment soon.

 

[Lily]

Hi thompson,

I am sorry you are having these problems, not being able to get a decent night's sleep makes everything so much worse :hug:

What course of action are they taking with your Vitamin D deficiency? Do they have you on supplements, check your levels intermittently and have they given you a reason for the deficiency, i.e. checked out liver, parathyroid, bowel and kidney function etc? Your answers may lie more with the fact you have a vitamin D deficiency.

love
Lily

 

[KiwiJen]

Have you looked into ankylosing spondylitis? I met a woman the other day whose entire family has the gene HLA B27 and her niece is the only woman in the family who is affected by the AS disease. You can get it tested by a blood test.

I'm sorry you have so much pain. I have a lot of pain as well and it really sucks.

 

[KarolH]

I am in limbo land on my way to what my family doctor is convinced is Lupus.

I was dx with Fibro a few years ago and MS in 2005.

I deal with severe chronic pain every day and it bites!

I am sorry your dealing with all of this on top of not sleeping well.

Everything is amplified when you do not sleep good.

Hope the new blood tests provide some answers for you.

Gentle hugs your way!

 

[mali-cas]

Hi Thompson,

I am currently dealing with a Fibro flare right now and can tell you that I definately have problems with tingling and numbness in my hands and feet when my fibro acts up.

I also have major sleep disturbances, but I find that the thing that helps me the most is sleeping whenever I need to and try to get back into a sleep routine.

I know it is hard to get into a sleeping routine and easy for me to sit here and say this is what you need to do. My hubby snores and it is disruptive to me. I am okay if I am asleep first, but he always falls asleep before me, so I got some ear plugs. When he leaves for work, he kisses me goodbye and I take the plugs out so that I hear my alarm in the morning. This has helped me tremendously, but it has taken a whole week of missing work and an adjustment in my Lyrica to help me get back into a sleeping routine.

I don't know if this long winded post has helped, my apologies for hijacking your thread, I just wanted to let you know that you are not alone.

Mali

 

[halfpintfl]

Hi Thompson, None of the autoimmune diseases, (that I know of ) are diagnosed by just blood tests. I had , and still have fibro, along with my lupus. I can tell you with no uncertanity that interrupted sleep is as good as no sleep. and your pain is very typical of fibro. You need something for pain, and something for sleep. You need to make a list of your symptoms, as sometimes those are as important as the bloods. I wish you luck, and keep posting if you have more questions. Be well.​