I haven't gotten a good understanding when most here are saying "I have been sick for x years", or one says "I have been bed ridden for x months or years" or "I have been on wheelchair for x amount of time."
Are we talking about a 24/7 or are we talking about most of the time you function normally and then get hit in an instant for x days or hours or minutes?
Please give me a sense of what we are talking about.
I am extremely concerned with my wife's constant neuro symptoms. It literately has been 5 years and just gradually go down, but never let go...
Thanks.
Posted by timaca (Member # 6911) on :
wtl~ What are your wife's neurological symptoms? Does she have other problems...joint, cardiac, GI, muscle pain, brain fog, fatigue?
I have (or had) all of the above. The only body part that hasn't had a problem is my nose (seriously).
Best, Timaca
Posted by Amanda (Member # 14107) on :
I have some symptoms which are constant (arthitis in my spine and hip), these have gotten very slowly worse over the last 5 years (I think we are going to do IVs on me, something I haven't tried yet)
Other symptoms tend to come and go on a montly cyle. So, for example, I have hearing issues, muscle twitching, and other things whici are worse for about 7 days, then are a little better for two weeks, then worse for 7 days etc...
the problem is that everyone is different, this is what makes lyme such a difficult disease to treat and to understand....and why there is such controversy about it.
Posted by littlebit27 (Member # 24477) on :
I have some symptoms that stay everyday, joint pain, heart rate through the roof, feet pain, shortness of breath, etc, etc, etc.
And then I have other symptoms that come and go...even my brain fog will lift every once in a while. My memory was better for like a week and then plop, right back to where I was.
But I agree with the above poster, Lyme is so difficult because it treats everyone differently, there is no cookie cutter way to treat Lyme.
Posted by 0ldman (Member # 22101) on :
It has been very similar for me, 2 weeks on, 2 weeks off.
Even that isn't reliable. In the beginning it was just bad, then 3 weeks bad, 1 good, then 2 and 2, then 1 bad week and 3 good ones, now it has flipped around to 3 bad 1 good again.
The neuro problems don't go away quickly. They can be affected quickly and take quite a bit of time to heal. Its very frustrating.
Posted by mbdq (Member # 26277) on :
I have neuro symptoms that are pretty constant and other symptoms that come and go.
Every day I have tremors in the AM, burning pain in my head, some neck stiffness.
My body rotates through joint stiffness and pain, chest pain, shooting stabbing pains, muscle twitching and debilitating migraines and fatigue.
The constant neuro symptoms were there before I started treatment, I have been treating for 9.5 months.
I consider myself having a great day when I mostly just have the neuro symptoms and pain level stays below a 3. I can function at that level and I am there ~20% of the time.
Other days, its a crap shoot- never quite know where I am going to be.
Posted by wtl (Member # 19883) on :
Timaca - she has main symptoms of foggy brain, short term memroy and memory loss, confusion, body balance, muscle spasm (seems to be helped by megnesium and baclofen), stumbles and falls often, her ankle (especially on left) is all bent, especially when she tries to walk. Her eye tests fine, and she claims often her ear is either ringing or full, her voice was mostly gone about 2 months ago and hasn't come back.
Thanks everyone. This is very helpful for me to understand.
Since she has such foggy brain now, she hardly could even remember her own condition in comparison to the day before so it is very hard for me to keep track on her day-to-day condition. Only from my eyes, everything stays the same, or gotten worse over time.
I have tried to ask her to write down, and she is having an extremely hard time to do it. later I realized that she simply can't remember how she feels the day before so there isn't any point to write it down. She lives by the moment. Considering 5 years ago she was the top notch engineer in her firm - I am still not believing what has happened...
Posted by timaca (Member # 6911) on :
wtl~ Sounds like you need to be the person to record her symptoms. Ask her questions to understand her brain cognition. Find a calendar with enough space to write on for each day and record what you observe. What's worse, what's new, what's better. Make it a brief recording, but it does help to keep a record.
Does HSP (or whatever she was diagnosed with) also include cognitive problems? Is she taking calcium? If so, she may want to stop that due to her muscle spasms...
I am so sorry that she is in such a downward spiral. You are so kind to do research to help her.
Best, Timaca
Posted by wtl (Member # 19883) on :
Thank you for your thougths and kind words, Timaca.
I have been keeping a brief note with me and do ask her in a daily basis. But I often fail to record that intimate sensation of her body as a result.
No, she is not taking any calcium but does take megnesium and baclofen, though since she started taking megnesium, I have managed to cut down her baclofen and so far it seems to work.
HSP is not officially linked to any mental issues, though by talking to some patients in HSP community, mental issue is more common than the medical journal suggests.
Posted by Need Lots of Help (Member # 18603) on :
WTL,
My fatigue is my main issue, along with headaches, joint pain, pelvic/tummy pain,dry eyes.....
The fatigue has never relented for me, only worsened over the 20 years I have had this crap. The headaches were really bad until about a year ago, and why they stopped, I don't know. The dry eyes came on a year ago, and now is an everyday thing.
The knee pain comes and goes. The pelvic/tummy pain comes and goes.
What it is all based on, I don't know, but if I could find a cure for just the fatigue...I would be all over it.