Odd symptom of RA

[Mumtoggk]

Hi there, I was diagnosed a year ago and am still struggling to manage this curse. My meds have got the inflammation under control but I still have a lot of pain and fatigue is overwhelming a lot of the time. The problem I wanted to ask about though is quite difficult to describe but is having a dreadful impact on my ability to sleep or rest. It consists of a horrible feeling of 'jumpiness' - almost like a kind of restless leg syndrome but it can be in my legs, arms and shoulders. A lady I know that also has RA described it as if she had 'bubbly blood' but I haven't seen anything like it mentioned anywhere. I just wondered if anyone, first of all knows what I'm talking about and has any advice on dealing with it.

[wishbone]

Hi Mum,

Sounds similar to what I've had on and off (mostly on) over the last approx 3 years. When it first happened, it was mostly in my feet/legs, but occasionally my whole body would jump...not very nice at all, especially as it causes short sharp pain in arthritis affected joints . It did ease off for a while, but has returned, this time confined mainly to my shoulder joints and occasionally elbows. Bl**dy hurts more to as my shoulder joints are quite badly affected by RA.

When I first had it I asked a doc what he thought caused it. As I recall, he put it down to medication, mainly tramadol I was/am taking. Was also told it could be restless leg syndrome, which I'm pretty sure it's not . Also asked my rheumy but didn't really get an answer. In my case I think it could be related to inflammation levels as the jumps were worse the first time when my inflammation was really bad. They are less frequent this episode, and though my inflammation is bad, it's not as bad as before. Could be the inflammation is affecting the nerves?..but what do I know.

edit....forgot to say these jumps only happen when I'm in the process of dropping off to sleep.

[Mumtoggk in reply to wishbone]

Thanks for this, I was beginning to think it was all in my head. Like you, I haven't really had any answers from medical staff. I'm not on tramadol and can't really link it to my meds but can't rule that out. Don't think it's linked to inflammation either in my case because my inflammatory markers are normal at the moment. Just don't know how to help myself when it hits because I'm usually shattered and there's no way you can sleep with it. Thanks again for your reply - don't feel as though I'm losing my mind now.

[wishbone in reply to Mumtoggk]

I could be wrong about my inflammation level. I presumed my markers are high because my RA is not well controlled and I'm in fair amount of pain. I'll ask my rheumy when I see her. As mentioned, my jumps don't happen when I'm sleeping, only when I'm dropping off. I wonder if it's something to do with the process of the body relaxing? Whatever it is, it's certainly a strange one! After a very long break, I should be starting back on meds fairly soon. I never used to have these jumps when I was taking meds so it will be interesting to see if they put a stop to them.

Please let me know if you ever find out what they are and I'll do likewise.

Take care

[dwsurquhart]

I am going on 4 years now of poor sleep, pain and fatigue.

Every night when I try to get to sleep, my legs begin to throb and the pain increases. This might be because the pain meds are wearing off.

The feeling of jumpy legs is can be quite pronounced, I would say more with some than others. For me, my wife says it sometime looks like I am running in my sleep because my legs don't stop moving. Other times I cannot get to sleep as I cannot find a position where my legs do not hurt.

All day long the pain is there, and then the fatigue sets in. I am good now for around 4 hours then need a nap to continue on for another few hours.

To relax before bed, I have started taking Magnesium Malate as a light muscle relaxer, and also a couple hours before bed I am on either Tizanadine (zanaflex) heavy duty muscle relaxer, or amatriptyline.

The Tizanadine is a fast acting short duration muscle relaxer usually used my MS patients. Works great to relax all muscles to get to sleep.

Amatriptyline is a muscle relaxer / antidepressant and also works well to relax the body when taking the proper dosage. Ask you doctor about these and if they would work for you. I know they help me.

Cheers Scott

[Mall]

I sometimes have this jumpiness feeling. As you say it's had to describe, it's like all over my body feeling if it is going to jump, the feeling before, the tension, seems worse than the actual jump. I have associated it with my meds but unsure why.

[Rembrandt2nd]

I go through the same thing. I refer to it as "electricity" going through my veins that, as the "power" goes up, so does the pain... It's kinda like when uou go to a chiropractor and the put those pads with electricity on your neck and back muscles. I'm wondering if it isn't Fibromyalgia? When I search the symptoms, it favors it. It's just another autoimmune disorder. It's possible to have several. I have R.A., Colegeans Disease, Myopathy, "Frozen Shoulder," and then this buzzing blood thing.

[Mandalou]

I get episodes of buzzing its almost like a manifestation of inflammation.

This can happen in my knees my feet , my lower torso.

As for the jumping before sleep I think that even might be common in the general population.

I suffer too and am really sympathetic to anyone who is in pain at night, never mind the day time.

Mx

[wishbone in reply to Mandalou]

No buzzing here...something to be thankful for I suppose.

Not sure if regular bouts of jumping while dropping off to sleep is common in the general population, if it is I'd be very surprised if it happens with the frequency that I'm experiencing. It seems most likely to me that it's connected to auto immune disease or the drugs to treat it.

Anyway, I had a jump free night last night...wonder if I'm cured!?

[Amy_Lee]

I am in remission after about 1 1/2 years of treatment and I am still trying to learn how to sleep well now. That was because those days the pain was killing me and I could not sleep most of the time so I would be very tired during the day. Thereafter, though I am painless but the difficulty in sleeping is something I still have to deal with until today.

I was diagnosed RA in end Jun 2014 and was being declared in remission about end 2015. I therefore try to sleep early and get up early automatically.

Amy

[Mumtoggk]

Thanks so much to you all for your replies. I'm new to this forum and it is so good to know that I am not alone.

You are right about the electricity in the veins feeling. That is exactly how it feels. I liken it to the old Slendertone pads which are the same idea as the chiropractor things.

I will definitely speak to my gp about the Magnesium Malate etc. And see what he says.

Thanks again everyone,

Margaret

[Kariss]

Hi, I found your query really interesting because I used to have the exact symptoms you’ve described on and off for many years with no knowledge of what caused it. My doctor didn’t seem to understand what I was going on about but I definitely felt as though my blood was aerated as it travelled through my body and it was always worse at night. It made me feel extremely anxious and nervy. I was on methotrexate at the time (and still am). I had assumed it was the inflammation which was always raised. However, reading your post made me realise that these symptoms have disappeared and I hadn’t even noticed! If I think back this can be traced to being put on a small dose of sertraline for low mood, so maybe it could be related to nerves and general anxiety? My other meds have not changed and my RA is still active so I am intrigued what caused the fizzy feeling. I have tried magnesium supplement in the form of a spray (this gets into the system quickest) and have found it very helpful, especially on my legs at night when the aching prevents me sleeping. I would be interested to hear what your doctors/ consultants tell you as mine were no help!

Good luck and best wishes, Kariss

[Mumtoggk in reply to Kariss]

Thanks Kariss. I'm on methotrexate, etanercept and sertraline too but nothing I take seems to help whatever this is. I spoke to my consultant but he couldn't offer any real explanation. I'm going to speak to my gp on Friday and will ask him about it. I'm definitely going to try magnesium too. Will keep you posted.

Thanks again,

Margaret

[Hidden in reply to Mumtoggk]

Hi Margaret. The fizzing started before RA for me and has continued for 8 years - sometimes barely noticeably - other times like a full scale vibration throughout my body - increasingly the latter. I have no answers for you but was diagnosed with Sjögren’s Syndrome two years ago and found that most of my pain was due to a non length dependent small fibre neuropathy. Nowadays my doctors tend to blame all my problems on this.

[Mumtoggk in reply to Hidden]

This is really interesting. I have never heard of this syndrome and, when I look online, a lot of the symptoms are very relevant to me. I'm going to discuss this with my gp on Friday to see what he says.

Thank you, Margaret

[noramayhew]

I have this sensation in my legs Mumtoggk. It's almost like a kind of tickle in my legs and feet and I have to keep moving them. I am also on anti depressants and I put it down to that though I don't know what causes it.

[Mumtoggk in reply to noramayhew]

It is all very odd but really painful at times too. I spoke to my gp about it last week but didn't really get anywhere. He didn't seem to know what I was talking about and was non-committal re Magnesium Malate but I'm going to try it anyway. Thanks again everyone for your responses.

[Hidden]

I get the same sort of feeling mainly in my legs when I’m trying to go to sleep