Hi i was just wondering if anyone had any thoughts on some weird and scarey symptoms that i'm having right now.
The thing is i have AS and possible PsA i've been on weekly enbrel injections for about 4 months now last rheumy appointment my inflamation markers were down but i was still in alot pain with my back and hip.
The rheumy pressed pressure points and said i had wide spread pain which was strange she gave me a steroid injection and mumbled something about fibromyalgia then ordered bloods she said my iron was low and needed tabs for 5 months.
But the strange symtoms i'm getting lately are headaches and
light headed,
part of my left hand went numb and my little finger for about 10 mins,
memory probs,
numbness in hands and toes,
muscle spasms in backs of legs and back,
sometimes not been able to write words properly,
feeling sick,
heart palpatations and feeling of being spaced out now and again.
I went to drs today and he told me to keep a dairy for the next month coz these are weird symptoms and he doesnt know if they are to do with my meds, illness or something new but i'm feeling so weired its frightening me.
Has anyone got any clues please?
Thanks for reading.

Hi, chezsunny:

We each have some neurological issues, usually due to collapsing vertebrae and other types of stenosis. Some of these are transient and due to temporary inflammation, but this is just a preview of the permanent damage that will ensue if we allow it.

The numbness is common, headaches might precede neck fusion; usually due to circulation issues there from lymph accumulation and debris load.

I'm sure most of us have had muscle spasms; I certainly had this problem big-time when I had active symptoms.

Brain fog--being 'spaced out,' was a problem and I think it is due to too much 'crud in the blood,' with the excessive production of the dimer IgA in lymph but the monomer in blood.

Heart palpitations are also common amongst us, but there are very different levels even tachycardia due to nerve conduction problems.

I think everyone with AS can report most of these symptoms and it is really just my own opinion that we should supplement aggressively, but I also share the primary opinion with many others here that we should try and limit disease activity as much as possible. Many of us accomplish this through 'substrate modulation,' also-known-as diet (NSD).

Welcome to AS now get well,
HEALTH,
John

i think your doctor has a good plan in trying to figure out the cause(s) of these symptoms.

while the symptoms could be from other things, i'll share my experiences:

headaches:
have had them since i was a child, migraines, so i know what they feel like, and know what triggers them. so when i was getting different headaches, turned out that from the combination of inflammation and bone spurs (probably caused by the spondy) i get neck, upper back muscle spasms, plus numbness in my face, and even the muscles in the back of my head (occipital, etc) spasm. all from nerves being impinged by those bone spurs / inflammation in the c-spine. when the head muscles spasmed, terrible headaches. getting the neck and upper back addressed has helped so much. i had cortisone injection to the facet joints of the c-spine, and trigger point injections in the upper back. so much better, for now!

but headaches that you've never had before can be a range of things, so best to take them seriously, as it sounds like your doctor is doing.

light headed? haven't had that.

numbness could be a range of things, but one thing can be inflamed joints or spasming muscles or trigger points pressing on nerves, referring pain or numbness. as i said, i get numbness in my face when i sit if the chair is bothering my c-spine.

memory problems. i only had that on celebrex and an nsaid (don't remember which one?). but can have brain fog with autoimmune diseses, fibro, etc too.

numbness in hands and toes. see comments on numbness above.

muscle spasms. yes, lots. don't know what was causing the calf and foot cramps, but magnesium helped a lot. the muscle spasms: lower to moderate level in my upper back / neck is from the nerves being compressed by the bone spurs espeically when i flare where the fluid from inflammation makes the nerve compression worse. strong ones in my lower back are in response to SI joint inflammation. weaker ones have been due to the enthesitis. its like the muscles are tightening to do the work that the inflamed tendons and ligaments can't. interestingly, when i took the muscle relaxants for the upper back / neck stuff (the most chronic, painful, debilitating of all the daily muscle spasms), my tendonitises all did better; like the muscles were no longer tugging a the tendons.

feeling sick: when i go into a flare, it feels no different than the day or two before i have a headcold / the flu. the only way i can differentiate the two is the symptoms that follow.

heart palpatations: only when i'm in severe pain. then my heart pounds! as the pain lowers, the heart pounding goes away.

anyway, sounds like your doctor is motivated to trying to figure it all out. wishing you good luck!

When I read heart palpitatons and that you were given a steroid shot, that is the first thing that came to my mind. I have even asked for half a dose of a shot of steroids and it still makes my heart palpitate.

Have you read all the side effects of your medications ? I know some mention dizziness and spasms? I don't know about numbness as a side effect though. I hope you feel better real soon, take care.

Thanx so much for all your replies it always makes me feel better knowing i'm not on my own with this.
You're replies have really helped i never thought of the headaches being a result of some neck inflammation or something along those lines as my neck as been more involved lately in my AS.
I know the low iron can account for some symptoms too it was just the fact that these symptoms came all at once within about 3 days and the numbness in my hand also my lips just scared the hell out of me.
I've read on this site before about some people on Enbrel have said that they believe it gave them MS and this stook in my mind.
I thought i'd got a grip on this whole AS thing but now i wonder, i have a 5 year old son and i worry for him i dont want him seeing mummy poorly all the time, but lately i just feel so ill.
I hope you all keep well and thanx again for the support. x

Hi chezsunny,

New symptoms that seem to come on suddenly are something I'd want to be sure was investigated. From your description it's a bit hard to tell if your rheumatologist did examine you to rule out the uncommon possibility of developing demyelinating disease. Continuing a medication for an additional month and keeping a diary is fine, if the rheumy did an exam and didn't see a problem. Pressing on a few places and mumbling something about FMS would frankly not give me confidence that I would want. If you think back... did they do a quick eye check, check your reflexes, hand strength or anything of that nature? If yes, then I'd rest a bit easier.

Personally, muscle spasms wouldn't worry me. Headaches, light-headedness or spacey/confusion I might wonder about a medication allergy or anemia... but a new distinct numbness? With that symptom, I'd seek assurance that the rare possibility had been ruled out.

The thing about your post that caught my attention was that these new symptoms have you weird-ed out and frightened. I really believe that sometimes we just need to trust our instincts. You know your situation the best. If AS has damaged your cervical spine, then that could explain the numbness. If it hasn't progressed to that stage, then I'd suggest calling your rhuemy back and asking very specifically if you were examined to rule out a neurological adverse event. If yes, then great! If no, then I'd firmly and politely mention the numbness again, and say you'd like to be re-examined for peace of mind.

Peace of mind in taking these meds is important. Just be sure to pipe up with your concerns and be sure you've been heard.

Hope you'll be feeling better soon!

Thankyou Mig for your reply
I have just spent half hour replying then managed to wipe it by mistake, the jist being that I am frightened very much so and I dont think that I'm intelligent enough to understand this stupid illness.
Everyone on here has such great advice but most of it just goes above my head because I don't get it.
I don't know if its the illness making me feel stuff or is it the meds or is it something else?? I have no idea anymore.
Sorry for the rant.
Thankyou again for your reply.

HI

I know anemia can cause a lot of these symptoms, and of course so can Fibro. Google iron def and see all the symptoms.

Janet

Hi chezsunny, you are welcome. I'm just sorry that you are experiencing so many difficulties right now and feeling so frightened.

I've just read back on some of your posts and learned that you've already had allergic reactions to Humira as well as Enbrel, in the form of itchiness and hives. Your light-headedness and confusion/spacey feeling and headaches can also be signs of an allergic reaction.

I really think you need more support from the prescribing rheumatologist, if it's possible to get back in to see them. One suggestion might be to call and ask if it would be safe to skip 1 week of Enbrel, just to see if some of these new symptoms ease off. Use the word frightened!

It is a stupid illness; it's complicated, a little different in each person, and we are all on a learning curve - you're not alone! I've had AS for 32 yrs and I'm still learning. You are still very new to the diagnosis and it's a long road ahead, so please be kind to yourself. You will figure it out and things will improve. It won't always seem this scary.

It is probably a combination of both the rotten illness and medication effects that are making you feel this way.

Plain advice - please call your rheumy. Tell them you think you are experiencing negative side-effects and are frightened.

Big hugs!!
mig

you should definitely check into it being a side effect of your medication. i just got off enbrel from having weird side effects. its totally different for each person though, so it could be from something else. i do know that MS is a side effect of enbrel, it is very rare but worth looking into. i have been experiencing weird symptoms while not even on any meds, i think its a combination of things, which makes it pretty frustrating at times. its also hard to know how to navigate whether or not i am getting obsessed and totally enveloped by a "symptom" out of fear or because it might actually be something i need to take care of. again, im just speaking for myself.. not trying to say anything about you, but it something i need to watch in myself.
i hope that you figure out what is going on for you and that you start feeling better...