My mom seems have huge flare in her RA and now she experiences strange feelings. It began rather like peripheral neuropathy (numbness, lack of sensitivity in legs and hands, tingling). But now she have additional symptoms. It feels like something pulls and tight her inside. She says its like she was placed in big cocoon. First it was like her knees, calves and hands are tightly bandaged, but stiffness is encrease day by day and now it is all around shoulders, back, hips, buttocks, neck. Not like joint stiffness, it affects soft parts too.
We are wondering if its tendons, muscles or something. Her legs and hands almost don’t obey her. Seems we will need sick-nurse soon, cause we are in we are in big trouble.
She took her two rituximab infusions two months ago. These symptoms appeared a little earlier rituximab and was barely noticeable but became much bigger after. Is it RA or rituximab side effect? Did anyone come something like that through? Any info or assumptions wouild be much appreciated.
Written by
evochka
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Firstly sorry that your mother is having these horrible sensory issues. RA is a very complex disease and can overlap with other connective tissue conditions and affects each one of us differently. For instance for six months I've had pins and needles and this has now changed into a form of parasthesia which makes me feel as if I were up to my waist in icy water constantly - which in turn feels as if it's burning my flesh - but it isn't. No one seems to know if this is part of my RA or whether it is because of a secondary condition such as Raynauds.
So the cacoon sensation doesn't surprise me and it is for doctors to work out whether it is due to her RA or Rituximab or perhaps a secondary condition. She is at least very lucky to have a supportive and concerned daughter looking out for her. Sympathies to you both. Tilda
Hello
Your Mother could possibly have some Raynauds, although some of these symptoms could be Nurological pain where your mother will be suffering from numbness, pins and needles, and associated problems. this pain needs further medications such as Amytryptalene.
There also could be stiffness of the tendons, that can prove a problem.
If your mother is on a biologic, above there could be some contraindications so you really need to discuss these problems with the RA nurse as she is a qualified nurse, I am not qualified as a Doctor or Specialist
Definitely something to report to the RA nurse or rheumatologist, as it is possible its due to the anti-tnf or other meds.
Sorry to hear about your Mum having a bad time. Because these symptoms can have quite a few causes its best to get her to the doc straight away so she can run tests.
The most common reason is peripheral neuropathy which several diseases are associated with particularly diabetes, This one isnt a common reason but also make sure they rule out her spine as being the source. When you talked about the tightness my ears pricked up.... I get those same sensations especially when I have compression in the neck (Ive had 3 ops for 5 vertebrae to be fused there). Its like having very tight stockings and/or gloves on - as well as the pins and needles/tingling/nubness, I also get a burning feeling and itchy/ant like sensations in my lower legs, lots of cramps and my limbs are weak. As I said, it may not be that, but RA can affect the cervical spine - look up "myelopathy" for the symptoms of compression there.
I hope your Mum finds the answer soon, it can wear you down not knowing whats going on.
"The diagnosis of chronic or early cervical myelopathy can be extremely difficult as the signs and symptoms are notoriously subtle. The patient will often complain of difficulty with fine movements and control of the fingers. Fastening and unfastening buttons, for example, can become difficult. The gait disturbance may be described as a sense of unsteadyness, rather than weakness. Sensory loss is highly variable and sometimes takes the form of “glove-and-stocking” distribution that is often seen in peripheral neuropathy. A mild peripheral neuropathy often occurs normally in the elderly and is often nonsymptomatic except for loss of the ankle reflex. When this coexists with chronic myelopathy, the expected increase in deep tendon reflexes may be masked. Increased tone may be the only abnormal sign in the lower extremities. This is checked by asking the seated patient to dangle the legs as loosely as possible off the edge of the examination table. Grasp the lower leg and shake it gently back and forth—the foot and ankle should be floppy. If instead the lower leg, ankle, and foot move together stiffly as a unit, myelopathy should be suspected."
Thanks for your thoughts. Which test did you have to diagnose it? At the moment, all doctors we have talked don't think this is myelopathy... But they have no alternative versions too. Symptoms keep growing and we are in panic. Thinking about computer tomography.
MRI is the best test for cord compression, it shows more soft tissue like the nerves and how bone is impacting on the thecal sac and cord, where as a CT shows is more just bony structure. Neurological assessments have always confirmed my compressions but I remember reading that sometimes people can still have compression even tho the assessment is fine.
Its so hard when you dont know whats happening. Your mums symptoms could be totally due to peripheral neuropathy or anything else really, it just sounded like the same sensations I get when I have compression.
Im sorry to read you have RA too I also keep telling myself that all we can do is plod on and keep talking to people who understand what we are going through.
Thanks for opinions and kind words, ladies. This is most supporting site and people I found so far. Too bad, I have my own RA since I was 5 and it totally ruined my body so I can't help my mom much... But I do my best and will keep doing.
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