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Extreme water retention a symptom of Lyme?

Posted , 12 users are following.

Zilla1
Zilla1

Hi everyone. Long painful story short, I was finally diagnosed two months ago with Lyme after suffering through two years of unexplained fatigue, hair loss, muscle weakness and severe depression. I'm currently under a protocol of antibiotics and natural herbs to combat the disease. I know it's too early to feel much improvement (and I don't) but I'm very curious if anyone has had major fluid retention as a symptom of the Lyme. I've had it since the very beginning and it encompasses my entire body. I'm normally an avid fitness fanatic with weight lifting and HIIT cardio. I've also followed a low carb, no sugar, no dairy diet for 20 years and the only time I ever experienced water retention was when I would indulge in the occasional higher carb meal. But that was always temporary and went away after a few days. This fluid retention has been plaguing me for two years. It gets so bad my legs are nearly twice their size sometimes. And it is everywhere. My face, arms, back etc. Has anyone else encountered this symptom? Most people only complain about their face or feet swelling. It's starting to really add to my depression because I don't know if it will ever go away. I'm hoping as the disease subsides this will subside with it. Losing hope here! Thanks!

1 like, 17 replies

17 Replies

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  • Mike9616
    Mike9616 Zilla1

    Posted

    I can't say I've encountered the water retention. But speaking on my symptoms they take awhile to subside. Make sure you mention that to your dr. Hang in there it takes forever you will eventually start feeling better trust me. 

    • Zilla1
      Zilla1 Mike9616

      Posted

      Thanks for the reply and words of encouragement. It does seem like it's taking forever to feel better. And the doctor knows about the fluid retention but hasn't encountered that before. I'm the only lucky one, I guess. 

  • terry62719
    terry62719 Zilla1

    Posted

    Hi dolls OMG what can I say 

    How did you eventually get diagnosed as I believe for sure I have lymes but the NHS test I have had done came back negative  I picked a tiny black pin like thing out of my right ankle. I had the bullseye rash and my foot went numb I've had terrible muscle spasms in my leg and thigh muscle  and also recently in my bum cheek. I am now desperately depressed big time. I've been on 1x5 mg of diazepam a day since December but trying to wean myself of them as I have terrible brain fog. I'm honestly suicidal. Now you mention your depressed and you've. Been diagnosed I'm even more sure I have it !!!!!! 

    • Patient
      Patient terry62719

      Posted

      Hi terry62719

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

    • terry62719
      terry62719 Patient

      Posted

      Thanks for the message. I Appreciate it. No one can help me through this I've got nerve problems in my right leg and I'm in constant pain twitching muscles and muscle wasting of my right calf muscle now my right bum cheek also. I've been referred to see a professor in London had ct scans MRI scans and no one has told me what can be done I recently broke my pelvis and whilst on sick was made redundant I've just started a new job this week but it's a more physical job than I had. And I'm realising this job is making my health issues worse. I'm realising if I can't work I'm going to loose everything. I'm going to let my family down due to bad health. I'm in agony with this and feel alone as my wife is sick of me being in a downer. Also due to the pelvic opp I have lost most of the feeling in my penis I have date to see a doctor about that on 23 oct. so all in all my life 6 months ago was good. Good health good job. Now s**t job bad health and can't see a way forward. I'm 50 and life suddenly is crap. I have been on diazepam tablets since oct to calm my nerves to stop the twitching but they aren't helping now iether I'm trying to come of them so my brain don't seem to be as foggy but now I'm so so depressed I sat in my car yesterday 2 hours just crying I couldn't help it omg don't know what to do. my grandma and my mum had nerve issues they're all dead now.  so I think I'm doomed genetically. 

  • terry62719
    terry62719 Zilla1

    Posted

    As for water retention I haven't had any issues although having said that I have had issues due to braking my pelvis back in July so I've been getting over that also and ended up with catchers and did have retention issues so maybe was also due to lymes ?? 

    • Zilla1
      Zilla1 terry62719

      Posted

      Hi Terry. I'm so sorry about what you're going through. I don't have nearly as much going on as you do, but I feel the same in that my life and health were fantastic two years ago but now I feel the worst I ever have. (Although, I feel slightly better after getting the official Lyme diagnosis after years of struggling with "what is wrong with me?!" questions.) I was tested for Lyme one year ago but that was the basic test most labs use which doesn't which, I've since learned, aren't very reliable. I had to pay for my own in depth. It seems you are in the U.K. so I'm not sure if they are available there. It's probably worth checking out. You can't get better if you don't know what the real problem is. And please hang in there. I know it's hard when you feel like there is no hope left to keep going. Everyone here understands. 

      [b]I have removed reference to individual private clinics which are not supported by UK doctors[b]

    • terry62719
      terry62719 Zilla1

      Posted

      Looks like I'm going to have to pay for lymes test but I don't know where to start  I was made redundant so money is tight I started new job just this week but finding it very hard to hold myself together 

      Thanks for your message kind regards 

  • julieth69418
    julieth69418 Zilla1

    Posted

    I am sorry about what you are going through.  I am going through the same issues.  I have a lot of fluid retention.  Doing a salt protocol and salt baths will help.  I also seem to  feel better when I do 15 min in a Sauna.  I have been told it just takes time.  What specific herbs are you taking?  I am always trying new things.  Don't give up, things will get better.

  • bree97726
    bree97726 Zilla1

    Posted

    I have this also! It has been a nightmare! I have had body issues since i was 13, and had an ongoing eating disorder till recently this diagnoisis. Unsure as to if its messing with my kidneys or hormones to cause such fluid retention but its causing me extreme sadness as well. I did modeling and was a full time traveling makeup artist, I havent left my house in months because i cant even deal with it. Are you experience hair shedding as well??
    • Zilla1
      Zilla1 bree97726

      Posted

      Yes, I lost a lot of hair when my symptoms all started. Yet another reason to add to my depression. I also had eating disorders as a child. I finally tackled those and was living a very healthy, athletic life until this Lyme came about.  That’s making this water retention and weakness so much harder to deal with.  Physically (and mentally) I’m a mess and I don’t feel like it will ever get better. Months later I still haven’t seen any changes for the better. 
  • tracey_94133
    tracey_94133 Zilla1

    Posted

    Hi, I have serious water retention... Seen so many Dr's and never getting any answers... Ten years later and I still have it! Also now have hypothyroidism and pots syndrome and still Dr's are scratching there heads! I've hit a brick wall the only thing left was to do a lyme test which sadly came back postive! Gp gave me two weeks of antibiotics and told me I was lucky to get that! My health has deteriorate and I now also have high cortisol and high sugar! It just gets worse... Wishing you all the very best.

  • carolyn53692
    carolyn53692 Zilla1

    Posted

    I too have extreme fluid retention around my abdomen and lower legs. It's extremely uncomfortable and looks awful. I was told by my Lyme doctor to get my thyroid, heart and kidneys checked. I'm seeing a doctor in New York State but live in Ottawa. No one here takes me seriously. It's so frustrating. I started the antibiotics in mid January 2018. Don't know what will help. I would suggest joining a Lyme support group to get some ideas.

  • Kfitz
    Kfitz Zilla1

    Posted

    i know that this is 3 years old, but I wanted to reply for anyone else who might be looking this up. I've noticed that no one really talks about water retention and lyme disease together. But, I for one am experiencing this issue. I have swelling from my face down to my feet. I was just put on antibiotics for my Lyme disease. Hopefully it won't take long for the retention to subside. It's very uncomfortable. I don't care about how I look like, I'm just tired of all the weight I'm carrying around. It's bad enough that our muscles are already weak, add to the weakness extra weight.

  • Cherrypink
    Cherrypink Zilla1

    Posted

    I, too, suffer from water retention - swollen legs and fingers in particular. None of my rings fit any more and my boots are now really tight. I have also developed chronic thirst - I wake up several times a night because my mouth is so dry and I can never go anywhere without carrying a bottle of water. However, even when I drink, I continue to feel overwhelmingly thirsty. I don't have diabetes and no endocrinological cause has been found. The water retention started a month or so after I was bitten and the extreme thirst a couple of years after that. Unfortunately, there doesn't seem to be any treatment available - not that I can access anyway!

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