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Posted 5/22/2013 2:24 AM (GMT 0)
There have been several nights this week that I have had this strange feeling in my body, its not easy to describe but I will try.When I try to go to sleep and the pain in my feet and hands are horrible plus my hips are giving me heck, I have this really weird almost electric spark or butterfly feeling,(like I said can't really say how it feels), run through my body and it lasts for an hour or even longer. This happened only maybe twice before; this week it has happened almost every night. I also don't want to be touched I can't stand to be touched since this has been going on. blush I can't stand the way it makes me feel and that I don't know how to explain this feeling. I am not sure how to relate this to my rheumy. Any ideas of what I am talking about because this has me baffled?
Glea
Posted 5/23/2013 12:29 AM (GMT 0)
confused I guess no one has any answer on this? Lol. Could it be fibromyalgia ?
Posted 5/23/2013 12:35 AM (GMT 0)
Sorry your posting has not gotten answers yet, we do try hard and this forum is not as active as some others, but my idea would be to jot down what your feeling, and talk it over with your RA doctor, if you've started any new medications lately might be that or are you doing anything that could be causing these sensations???
Hope you can sort thru how and why this is happening. Many well wishes...
Posted 5/23/2013 12:44 AM (GMT 0)
Chartreux,
Thanks. I have been keeping a journal of everything. Ever since I started all these crazy meds, and of course RA seems to make you foggy and I think the meds do that to me, I carry it to my appointments. I just really wanted to know if anyone else experienced this.
Posted 5/23/2013 1:25 PM (GMT 0)
If you think it's the medication. www.drugs.com list a lot of side effects you could look and see...wish I could help you more...I always have pins and needles running down my legs and arms and loss of muscle due to a car accident years ago, so for me it's hard to tell if it's the medications of something different...
Sure hope some else can drop by and give you better answers...
Posted 5/25/2013 3:16 PM (GMT 0)
I know that some of the injectable biologic medications have multiple sclerosis as a side-effect. I believe that tingling and numbness in the extremities is one of the early symptoms of MS. I'm not sure if that is what you are feeling. Your concern over relaying these feelings to your doctor are something that I can certainly relate to. Sometimes it seems as if they believe you are just being a hypo-hypochondriac! It can be frustrating, for sure. You didn't mention what drugs you're taking, but if your are taking Enbrel or one of the other biologics, you might want to check out some of the resources on the web of the early symptoms of MS.

I hope you get to feeling better. I seems like those of us with RA are incessantly bombarded with physical challenges.

Post Edited (De La Rosa) : 5/25/2013 9:19:07 AM (GMT-6)

Posted 5/26/2013 1:56 AM (GMT 0)
De La Rosa,
Thanks for the advice. I have an appointment coming up soon and I will talk to my rheumy about this. I am on MTX injections once a week, loritab for pain, folic acid, and prednisone as needed. I do feel like a hypochondriac at times. Something new is always coming up and you know about the pain. I have 4 herniated disc as well and that alone is very disruptive to life, my grand babies are what gets me going if it wasn't for them I think I would have given up by now. Hope all is well with you!

Glea
Posted 5/26/2013 5:18 PM (GMT 0)
You are so lucky to have grandbabies! I wish I had. I feel very alone, and some days, I really don't know what there is to go on for...more pain and worsening health? I find myself thinking, I'm so tired of living! Then, when I have those heart episodes, for lack of a better word, I know that I'm really not tired of living. I'm just tired of being in pain, frustrated and lonely. I moved back in with my husband, after a 3 year separation, and I tell you I feel more alone now than I did when I was by myself.
Posted 5/27/2013 2:41 AM (GMT 0)
De La Rosa,
I am so sorry to hear that you are so lonesome. Life is really hard at times and the bad outways the good. Been there before and it's not fun. I hope things change for you really soon.

Glea
Posted 5/30/2013 4:42 PM (GMT 0)
Agree with De La Rosa, if you are taking biologics, you should call your Rheumatologist asap. Numbness, shock like sensations and tingling can be symptoms of MS. These were my mother's first symptoms(she has MS).

Also worth mentioning is that many people with RA also are prone to other autoimmune diseases. For instance, I have RA and also Hashimoto's thyroiditis. The reason I mention this is because numbness, tingling, and burning sensations in my arms were symptoms that I had before I started thyroid hormone replacement. I was scared to death that it was MS, since my mother had it, and avoided looking into it for about a year. It just got worse. I was also having vertigo (another MS symptom). Anyhow...long story short...it turned out to be a thyroid problem and all those symptoms sent away with proper treatment. By the way...kind of like sero negative RA, Hashimoto's can present with a normal TSH (thyroid stimulating hormone level). You have to get your thyroid antibodies checked as well, not just the TSH, which is what many GPs check, to know that you have it some cases.

Either way, these are symptoms that should not be ignored. I would have my thyroid levels: TSH, T3, T4 and antibodies (esp TPO) checked by my GP. I would also suggest an MS work up just to be sure. Usually this entails an mri of the brain and neck to check for lesions, evoked potential testing, etc. IF it's just in your hands...could be carpal tunnel, as many folks with RA have this. A neurologist can check for this.
Might be worth also getting your vitamin B12 and B6 levels checked, as low levels can cause these symptoms. I would also get my vit D levels checked. Many people with RA have critical levels. Mine were critical. There is much research out there that indicates that low levels of Vitamin D are related to several autoimmune diseases like MS, RA, thyroid problems, etc. Vitamin D needs to be taken with calcium btw, if you supplement.

Good luck. Hope you find some answers.
Posted 5/30/2013 4:59 PM (GMT 0)
RNwithRA you are right about having more than one autoimmune illness. I also have ulcerative colitis. Many on here do, and there are some with Crohn's disease. It good to have you in the forum.
Posted 5/31/2013 2:26 AM (GMT 0)
RNwithRA,
Thanks for the advice, now I'm getting worried. I have carpel tunnel have had for 19 years. The strange feeling was in a very unusual place. It was a deep weird sensation (felt like on the inside) that last for hours, I tried taking pain meds so that I could go to sleep, but no help. I have an appointment in two week, I will get in touch with my Dr and see if he thinks I need to come in before then.
Thanks,
Glea
Posted 5/31/2013 6:52 AM (GMT 0)
Glea,

I think that much of the research shows that if it is related to a biologic, then symptoms stop as soon as you stop the drug. I know that is easier said than done, especially when you finally found something that works.

I worried myself sick for a year. I was sure that I had MS. Turned out to be something I had never imagined and totally treatable. It might be something totally treatable like mine, or even better...just low vitamin B12. Try not to worry too much, but I would get it checked out.

If you are on biologics, then have your Rheumatologist work you in. He/She should do this straight away for these symptoms. Good luck. Hope it's something really simple to take care of.

Stacey
Posted 5/31/2013 6:53 AM (GMT 0)
De La Rosa,

Thanks very much. I cannot imagine having RA and inflammatory bowel disease. Tough combination. You must be very strong.

Stacey
Posted 6/11/2013 1:32 AM (GMT 0)
Glea. I had this happen to me this past weekend. Also was really in a fog. Just very strange feeling. Are you on enbrel by chance?
Posted 6/11/2013 2:12 AM (GMT 0)
Beger67,
I'm on MTX injections. This happens every so often but that time was really strange. Where do you get that strange feeling? Mine was throughout my torso. I couldn't stand the feeling and didn't want to be touched.
Glea
Posted 6/11/2013 11:43 PM (GMT 0)
Sure hope you get into your RA doctor and then see...Many Prayers and well wishes, keep us informed as we do care and a bit worried...
Posted 6/12/2013 1:35 AM (GMT 0)
Chartreux,

Thanks. I went Monday and he is running some blood tests. Hope to find out soon and will keep you posted.

Glea
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