I haven't posted for a while as I have had a huge flare up that lasted for some weeks. I am back to ask for advice, help or anything anyone can offer about a brand new symptom I am experiencing. I have a while to go before my next rheumy appointment and I am not sure where to turn in the mean time.
Although I say this is a new symptom, I have been experiencing it for years, but only now has it become extremely prominent and is far more severe. Over the past month I have had really bad upper back, lower neck pain. It feels muscular rather than skeletal but it is very stiff and sore, especially in work. After an hour of the pain setting in a have been getting the feeling of bugs crawling up and down the top of my sine. In a perfect line. It was so bad the other day that I had to ask a colleague to check if there was a bug on my back. It is now so obvious that it almost feels like pins and needles, but still travels in a crawling pattern. The pain has spread out to my shoulder blades also and however I sit there is always pressure in this area.
Does anyone else experience this sensation, does anyone know what could cause it. i have Mixed connective tissue disease - SLE, Sceroderma, Sjogrens and Raynauds. Thanks in advance everyone.
Cass xx
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cass1984
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hi there Cass.I had this crawling sensation exactly as you describe and it was the symptom I had when first diagnosed with fibromyalgia.I now have lupus and sjogrens symptoms but not as yet diagnosed,i do have raynauds.
Hi Anbuma, thanks for this. I know my Rheumy has mentioned Fibromyalgia before but I have never had this at this level. It is really horrible feeling and today I have had nerve pain there too. Thanks for your help xx
Hi cass. I was very interested to see this as it seems very similar to my own experiences. If I overdo things I get a strange sensation in my spine. Not quite pins and needles, not quite a tingling. More a sort of buzzing/ semi-crawling sensation. Very odd, and unpleasant. I, too, have recently had tremendous back pain as well. I'm sorry that i can't shed any light on the cause. I have tried Pregabalin (Lyrica), which I couldn't tolerate, Naproxen, which I couldn't tolerate. So now it's a case of resting when it happens. I hope you find something which helps and do post again and say how you're doing.
Hi MrsMouseSJ, thanks for this, it helps to know that I am not alone really. I rang y rheumy nurse yesterday who believes it is neurological involvement and they will readdress my medications next month. Doesn't really shed much light on it and it is still happening, even now as I type. It's such a horrid feeling. I will continue to rest my neck as much as possible. Thank you so much xx
Hi Cass, I have times when I have extreme pain also, as well as crawling sensation to where I try to brush off what is on me. I was told to get a massage once a week and to do some exercise in water. Of course when you are in pain the immediate response is to rest, whereas even with lupus and fibro, you end up with frozen shoulder, etc. working in water is low impact and the water makes it easier to move. Hope this helps.
Hi I think this sounds like something I get-it is just so hard to explain symptoms sometimes-mine is more in my neck-and goes up to the base of my skull/brain,to the 2 bony points, if you know what I mean!!-and although it is only a sensation, not so much a pain it can make me feel really nauseous - I get it both sides of my neck but only on one side at a time if that makes sense?? When it is really bad I need a pillow/cushion to rest my head/neck on or I just have to lay down-because it makes me feel sick holding my head up!!
Now if I tired to explain that feeling to anyone that does not have what we have, I know they would look at me like I was MAD!! If I've got it when watching TV with my boyfriend I just get a cushion and rest my neck, and tell him I feel a bit sick, its easier than trying to explain the sensation!!! And I cannot sit on my brothers sofa for too long as it has a very low back with no support, I start feeling nauseous.... I have had this for years-long before diagnosis-and have never mentioned it to my Rhuemy, as compared to other things it is just one of a list of many-but now wonder if I should - maybe it indicates neurological involvement...but then there would probably be other signs if that was the case? What does anyone else think??
I get that as well, but in my S1-L3 region. When it started up today, I got it in my hands and feet too. But it's never superficial, always feels like it's a in the joints or (in my back) it feels like it's on my spinal cord.
hey cass...couldn't help you much but, I had such kind of pain few months back. It doesn't happen frequently. But I thought it could be because of sitting for long hours. I usually do some stretches, take few breaks from work and avoid sitting consistently for too many hrs.
I'm a 63 year old female. My skin feels like bugs crawling on me all day. Night is really bad. It also feels like something crawling and touching the back of my neck. It's Horrible. I also have very painful muscle spasms and cramps in my legs, ankles and feet. My toes actually bend toward the top of my feet and becomes rock hard. HELP! Dhow
Hello can you please more in depth with your somatic sensation? Yours sounds a lot more advanced than others. Please can you explain what/any medications you were taking or are taking? Have you seen a neurologist? Thank you dearly for reading my reply.
I joined this site specifically to read your reply
Hello Cass. Same here. It feels like some kind of high pressured hot stinging. and it is constantly moving and rippling all along the spinal cord. and for me it comes with a headache around the crown of my head. If one intensifies so does the other.
The more it climbs up my spine the worst it gets. it seems to affect my cognitive capabilities and my memory and also my self confidence. As it gets worse i get more agitated more nervous more depressed. As a result, I can do nothing. At this moment it feels like a snake it is literally waving my spine in slow motion and thrusting at my brain stem. seems crazy i know.
My father is a doctor and when I tell him about it, he doesn't take it seriously, so i had to figure out a solution since it is almost bothering me 24 hours a day.
1) Ice, as i am writing this post i have an iced water bottle fixed at the base of my skull. it slows the effect and gives me some peace. Can't live without it.
2) There are some hypnoses videos on the internet that helped me so much. when I first used it, the pain instantly stopped. But when I stopped using them I got it back and the effect of the videos was not as effective as before. Just type "Bryan Zuniga Hypnoses".
3) Cupping very effective it gives me some relief. i do it on my own, but it will be better if you get the help of a professional.
4) Last but not least holy scriptures. As I it may be some kind of black magic and I had several people from my entourage making this assumption I use holy scriptures "in my case Quran" every night. The effects are the following. First the stinging start to be more agitated, then my spine gets stiff and finally it starts to slowly back down, but if I don't do it the next day it comes back as same as before.
I've been in this battle for almost 5 years now and honestly, sometimes I feel like losing hope. But what keeps me holding on is that I had several breakthroughs and when that happened, I felt amazing, focused and sharp, and i had access to my hole cognitive capabilities only by using these methods but what I lack is consistency. But the day that all of this will come to an end, I'll be ready to conquer the world :p!
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xx
Hot! I always feel very hot and my husband says I am a radiator in bed? (bad way!).
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Update after my post asking for advice to avoid a flare-up after surgery - my have a learned a lot since then!
