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recovery from sepsis , head pain ,fatigue

Hi not sure if I am posting inthe right place, but.... I recently had sepsis was taken to emergency and spent some time in ICU , had a close call, with very low bp, kidneys failing hallucinations etc etc. I pulled through and am home now. I have been resting for nearly 3 weeks and am not feeling myself. I have head pain, pain behind my left eye , general fatigue and have had a couple incidents of memory loss. ie; i could not remember my street address. I am still unable to go through a normal schedule for a day and have maybe a 2 hr window of energy in the mornig before needing to lay down again. what is going on, what can I do to recouperate faster. the doctor has recommended I see a neurologist. I am frightened, normally a very active, healthy 42 yr old woman. I have had ct scan, ekg, chest xray etc etc while inhospital and nothing was showing of concern. please share info, help, advice.
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547368 tn?1440541785
Hi Sharon,

I am so sorry to hear about your serious illness and sepsis. My heart goes out to you.

I will suggest that instead of adding on to an old post that next time make a new post. That should get better responses.

You have been through a lot. Your body experienced a major insult or trauma. It will take some time before you return to pre-illness condition. How long? In my experience it varies from individual to individual. Some ppl seem to recover in 3-4 weeks, others can take months.

So don't be too hard on yourself. Have patience and follow your physician's advice. Don't be afraid to consult your physician and tell him/her how you feel, express your concerns. He/She may want to do some labs.

I am so glad that you made it through such an ordeal. Take care my dear. Please let us know how you are doing.

My best to you,
Tuck
Helpful - 1
Avatar universal
I just turned 65 and seemed had some health problems which medication was all I needed.  I went on vacation and was in ICU within 72 hours.  I did not feel sick but told my friend I was seeing double at times.  Later on in the day I lost control of my bowels.  They took my blood pressure and it was something over 40.  They kept checking it and it wasn't going up by just resting.  My friends mother fortunately was a retired nurse and suspected it might be sepsis.  So after 6 days in the hospital I felt good enough to catch my plane back home.  Checked in with my PC Physician.  they took a blood test and just said I was low on magnesium, potassium, iron, white blood cells.  So I go back after the blood test expecting to follow up on sepsis.  The doctor just asked how I was feeling and I complained my kidneys hurt and was extreme constipated.  He said come back in six months.  So I proceeded to make appointments with specialists i.e. urologist and internist just to have them check me.  It seems to me the general doctors are afraid to deal with sepsis until your next attack or major breakdown ?  I would recommend getting second opinions.  I will find out if I have further damage to my organs beyond a blood test.  best to you all.
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Avatar universal




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strawberryborn1

I became ill with a UTI 4 months ago. I was so sick that I didn't realize I was ill. I just thought I was extremely tired, always on the go. then the pain hit like no other I ever felt before. every nerve, muscle, and bone hurt. I couldn't move. Went to ER, told them I was confused and was having a hard time speaking, they immediately thought I was having a stroke. after a CT and some lab work I was told I had severe UTI by the doctor. he gave me IV antibiotic, some to take home and I was dismissed. after the Dr. left the room the nurse on duty told me I was septic. being septic was not noted in my paperwork. she was making sure I knew how sick I was before I left. she called a week later to check on me on her own time. I had no insurance at the time so I was not admitted to the hospital. went home and had to rely completely on a friend to eat, take meds on time and help to bathroom for 2 weeks. so weak and delirious at times. after 2 weeks in bed I finally had the will to take a bath, with help. it exhausted me and I stayed in bed for another week. eventually I began to regain strength enough to feed myself, but was so confused I couldn't figure out how to open the bread. (BTW I can write better than I can speak today). it is four months later and I still struggle with the mental confusion depending on how tired and/or dehydrated I get. at first I could only stay up 2 hours, then 3 and so on. today I am doing good to stay up and busy 4 or 5 hours at a time. if I overdo it l need at least 3 days of rest to be able to get up again. it is still a struggle, but ever so slowly I am getting my strength back. PACING MYSELF IS HARD, BUT KEY. 4 months later I am better. I am realizing that the recovery period may take a lot longer than I had thought. this is not something you just "bounce back from". the worst part is the mental confusion, loss of cognitive skills and not being able to communicate what is happening to the Dr. and family/friends. some have labeled me as lazy or "shot-out" which doesn't help with self-esteem. I am grateful I found this site because the stories have let me know that I am not crazy. I was just a very sick woman, sicker than I thought. I now have the validation that I needed for my own sanity. thank you to everyone for sharing your experiences.
Helpful - 0
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Hi, I am a 31 yr old woman, my story starts with a hysterectomy I had to get due to bad endometriousis not sure I spelled that right lol anyways during the surgery the Dr accidentally clipped my bladder so I had to go home with a Foley catheter. Two weeks later I was in the er bc I wasnt peeing normal and and had clots in my bag. Come to find out urine had backed up into my ureter and caused a block so I had surgery to have a stent put in, (worst pain ever) and two week later it was taken out. then the pain in my back grew stronger and stronger and once again I was back at the urologist, he took many test and found that my ureter was four times the normal size, wish I could post a pic but any it made the opening to my bladder too narrow so my next surgery he used a balloon and inserted another stent, which had to be removed after a week from severe pain, finally my doc decided he could do a ureteral reimplantation which is where they cut out the bad part of the ureter and plug it into a diff part of the bladder, and again I went home with a Foley cath and had problems with it from the beginning it actually came out and I had to go back and have it put back in, finally the two weeks came and I could get it out bc my cystogram thing showed no leaks but I told the nurse I had a yeast infection and she still never checked my urine like their suppose to. Two days later I awoke in a lot of pain and weakness body aches headache, knew something wasn't right so I called my Dr who said everything was fine and he didn't think I needed pain meds ( he assumed from the six prior months and four diff surgeries that I was just withdrawing) he was wrong. About four hours later I decided maybe I just needed out of the house  so I went and got NY nails done all the while knowing something wasn't right in the back of my mind, I was starting to freeze couldn't stop shaking I got in my car and turned the heat on full blast even tho it was 75° outside, I called my sister told her I couldn't drive and to come get me but while I was waiting I got dizzy disoriented and saw that the shopping center I was at had a small urgent care I made myself walk in and they said they couldn't help me without even examining me, I collapsed and they called the squad, my fever was 105° I didn't know who I was or where I was or what was going on I just felt the pain everywhere down into every bone every muscle every part of my being, I was admitted to the hospital and my bp was extremely low 58/40 and my oxygen was low in the 80s they pushed iv antibiotics for four days and after the third day my fever finally broke the next day I left the hospital the Dr wasn't happy but I have two young children who need me. It has now been two weeks and I still run low grade fevers and hurt everywhere and am weak and like every story on here I can't do much and have to lay down every two hours. I feel as if my life is ruined and am in a depression, I have two kids to take care of and am struggling to do it, I have a wonderful husband who stands by me and family and friends but feel as if they don't understand the constant pains in my body and yes sometimes I feel like maybe I was supposed to die in the hospital but love god and know there's a reason I'm still here just wish this pain and weakness would stop, it doesn't help that I have a Dr who thinks I take too much pain meds either.

Thanks for listening to my story,
Pain and suffering in Ohio.
Avatar universal
I became ill with a UTI 4 months ago. I was so sick that I didn't realize I was ill. I just thought I was extremely tired, always on the go. then the pain hit like no other I ever felt before. every nerve, muscle, and bone hurt. I couldn't move. Went to ER, told them I was confused and was having a hard time speaking, they immediately thought I was having a stroke. after a CT and some lab work I was told I had severe UTI by the doctor. he gave me IV antibiotic, some to take home and I was dismissed. after the Dr. left the room the nurse on duty told me I was septic. being septic was not noted in my paperwork. she was making sure I knew how sick I was before I left. she called a week later to check on me on her own time. I had no insurance at the time so I was not admitted to the hospital. went home and had to rely completely on a friend to eat, take meds on time and help to bathroom for 2 weeks. so weak and delirious at times. after 2 weeks in bed I finally had the will to take a bath, with help. it exhausted me and I stayed in bed for another week. eventually I began to regain strength enough to feed myself, but was so confused I couldn't figure out how to open the bread. (BTW I can write better than I can speak today). it is four months later and I still struggle with the mental confusion depending on how tired and/or dehydrated I get. at first I could only stay up 2 hours, then 3 and so on. today I am doing good to stay up and busy 4 or 5 hours at a time. if I overdo it l need at least 3 days of rest to be able to get up again. it is still a struggle, but ever so slowly I am getting my strength back. PACING MYSELF IS HARD, BUT KEY. 4 months later I am better. I am realizing that the recovery period may take a lot longer than I had thought. this is not something you just "bounce back from". the worst part is the mental confusion, loss of cognitive skills and not being able to communicate what is happening to the Dr. and family/friends. some have labeled me as lazy or "shot-out" which doesn't help with self-esteem. I am grateful I found this site because the stories have let me know that I am not crazy. I was just a very sick woman, sicker than I thought. I now have the validation that I needed for my own sanity. thank you to everyone for sharing your experiences.
Helpful - 0
Avatar universal
22 female. Got sepsis from an abscess/wound on my leg. Both kidneys got abscesses. Went to the hospital cuz I couldnt walk hardly {sore swollen ankles and wrists, soles of feet hurt, severe abdominal pain, also couldnt eat for 5+ days and throwing up green. Spent a week in the hosptial and one week with daily antibiotic infusions done. Made a full recovery and livin good
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Avatar universal
I have been fighting recovery for six months now. Still have open wounds, so I have to be vigilant in my high protein diet and supplements. Women have a real vitamin D issue. I take at least 50000 a week.  I would get your tested right away and you can start by taking 10000 a day over the counter. Good luck!
Helpful - 0
547368 tn?1440541785
Hello - and thank you for sharing your horrific experience. It sounds like you are blessed to still be with us! Many of us can appreciate that feeling!

I apologize for taking several days to respond to your questions and concerns. I've had some medical issues - but I'm back.

I am far from an expert in PSS (Post Sepsis Syndrome). All I really know is my own experience - and what I've read here. I've learned a lot from a web site called, Sepsis Alliance. The organization was founded in 2007 by Dr. Carl Flatley, Here's the link:

http://www.sepsis.org/sepsis/post_sepsis_syndrome

On Sepsis Alliance I've read "....lasting physical issues can be explained, but there is more to PSS that cannot yet be explained, such as the disabling fatigue and chronic pain that many survivors experience."  

In other words they just don't know. I believe it is possible that what you are experiencing can be the result of your severe bout with Sepsis. That said I would want to r/o (rule out) any other medical issue that could be causing your SX (symptoms). I wouldn't want you - or your medical team to over look other pressing or serious possibilities.

Usually SXs that have no other explanation or cannot be attributed to other medical issues are then contributed to PSS - that's if they fit the criteria. Obviously they don't just willy-nilly say you have PSS just because they can't find answers. Understand that there are Practitioners that truly question the validity of a PSS diagnosis (DX). Not all recognize it.  

PSS is a condition that affects up to 50% of sepsis survivors. That's a fairly high percentage. It's also a newer DX - so there are not years of study to draw and learn from.  

Looking at your SX - queasiness and discomfort in the head and left eye can go hand in hand with migraines. The exhaustion doesn't necessarily fit but again I'm not an expert. Have you had recent imaging of your head or brain? If not I would request testing - just to cover all the bases. Be sure to ask that they use contrast - as it's more definitive.

It makes me sad that you have endured, "decades of embarrassment" for physical calamities that were/are beyond your control. There is nothing to be embarrassed over - you experienced a horrific ordeal when you contracted Sepsis. It's truly not your fault! It's very possible your SX were/are due to PSS - but even if it's not related to your HX of sepsis or PSS - you are still not responsible for your medical SXs. My heart goes out to you!

I hope something I've offered has been of help. I'll look forward to hearing from you again soon. Please stop in often.

Take Good Care of Yourself,
~Tuck
Helpful - 0
Avatar universal
This goes way back; I am now 73 years old. In 1967 I had my first child by emergency Caesarian section (14 days overdue!) at Buckland Hospital in Dover, UK. A couple of days after delivery I became extremely ill. I was violently sick and taken into intensive care. I was in coma - yet vaguely aware that people were visiting and thought I was going to die. Somehow I knew I wouldn't, and eventually recovered consciousness. I was in there for 16 days, diagnosed with Septicaemia and a paralytic Ileus. The hospital, I later realised, was filthy (it's fine now, of course.) It took a long time to learn to walk again, and I would have bad episodes of lower abdominal pain and collapse at least once a month for years afterwards. I seemed eventually to have recovered - but in my 40s I developed horrendous migraines, and then chronic food intolerances. The food issue resolved after a few years, but the migraines morphed as I aged, and now I experience episodes of exhaustion  with some queasiness and discomfort in the head and left eye. Any extra activity can bring this on, so I have to pace myself carefully, and social life is very restricted. I hadn't realised until now that these problems might be connected to what is now called Sepsis rather than Septicaemia. Is my story typical of long-term survivors? I would be most interested to know. To have had a legitimate reason for all those decades of embarrassment would be very comforting.
Helpful - 0
547368 tn?1440541785
Hello Simplysoothing,

Welcome. I want to thank you for sharing your experience. I'm sorry this happened to you.

Our teeth/mouth can be a source of infection - and yes even Sepsis. We often over look that source - as do our medical providers.  These infections can even enter our brain. It's a fact that the average person either doesn't know or doesn't think about.

I'm glad that your issue was finally detected - but sorry that you had so suffer for six years before it was detected/diagnosed. I hope you'll consider beginning your own thread by clicking on the pink  "Ask A Question" bar. You're info needs to be easier seen/found with an internet search - it won't hidden in this old thread. When you begin your own thread  - "Ask A Question" - more ppl will view your info.

Again thanks for sharing.

Best Wishes,
~Tuck
Helpful - 0
Avatar universal
I was ill for 6 years. My dentists said my teeth were fine BUT eventually I got a CT scan on a crowned tooth. It had only 1 and a half roots filled and it should have had all 4 root canaled. This was a painless underlying constant source of infection and was the reason that , no matter how many anti biotics I had, I would never be able to overcome the infection and it was constantly poisoning me. I have now had a specialist root canal treatment and am recovering. Bad dentistry causes sepsis.
Helpful - 0
547368 tn?1440541785
Sorry dear, Arianaz made just this one comment - and has not been on MH since. I am glad that she was able to give you some support in knowing you are not alone.

Members can chose to be notified if someone leaves a note or message on their Profile Page. If she did that you may be able to reach her through her Profile Page. I encourage you to give it a try.

I hope you will continue to heal. I wish you well. If we can help plz let us know. Best of luck to you!

Take Care,
~Tuck
Helpful - 0
Avatar universal
Hi Arianaz, I just read your story and it sounds so much like mine... I had a sepsis in August which in my case was induced by a streptocuccus bacterial infection on my foot. I spent 14 days i hospital and have been off work ever since. Hoping to be able to start work halftime in December....
I was wondering how you are feeling now, one year  after your post - I really hope you are feeling some drastic improvement. Are you still having any symptoms?
Do you have any tips and tricks? What helped with you, from your experience?
Thanks for sharing your story - it really helps seeing you're not the only one...
Ellenh (38 yr)
Helpful - 0
547368 tn?1440541785
Hello and Welcome,

I'm so sorry to hear about your husband. Sepsis is often a nasty ordeal and my heart goes out to both of you. I notice you have a question mark after Sepsis and UTI - does that mean you're uncertain of the DX (diagnosis)?

Much like most other conditions and/or infections your general health can have a play in the outcome. I mean this in regards to how quickly and completely you recover - and/or how extreme or severe an infection or disease actually becomes.

In PPS (Post Sepsis Syndrome) that seems to play a part to some degree but not to a large degree. Healthy, young ppl can develop PPS and Seniors may not ever develop it. It's a crap shoot.

65 is no longer considered old - as it was 60-75 years ago. I would hope the odds are pretty equal in for his recovery. Sepsis - unlike most infections -  effects our body as a whole and can just take time.

I hope your husband has a complete recovery and will be healthy and chipper for your Anniversary Cruise. Please let us know how he is doing. If you have additional questions - or just want to chat or vent, we're here.

Warm Wishes,
~Tuck
Helpful - 0
Avatar universal
My 65yr husband was discharged after 5 days in hospital with septasaemia ? Caused by a UTI?  2wks ago He was admitted with a high temp, terrible confusion,disorientation scored 4 out of 20 on a mini mental test.  Now  still gets some words muddled ,remains very tired , poor appetite, going on a cruise in 6 myths for our 45 Anniversary. Just hope he's well by then. Reading above notes there seems no guidelines to expect decent recovery. Is this right ?
Helpful - 0
547368 tn?1440541785
Hi Sharon,

Welcome to the Senior Health Community at MedHelp.

I've been close to dying several times. I had hallucinations also. I think you're asking if they were real? Medical science will say no. Those hallucinations are caused by medications or lack of oxygen to your brain.

That said - I don't always believe what Medical Science says. Personally I think it depends on the situation and the person. I also think that only that person knows what they "saw" or felt.

My hallucinations occurred even when I was awake. I actually saw my mother's head fold back in quarter folds and a black and white setting hen (chicken) rose - like on a hydraulic pedestal - from the top of her head. I know that was a hallucination. So maybe it depends on what you are calling a hallucination.

We're you "visited" by loved ones lost in death - or by a higher power? I believe that those things can and do happen. That's a belief system I hold - but science sure doesn't.

Believe what brings you comfort my dear. Life is short - take all the good  and comfort you can find. Those are my thoughts. I think your heart knows.

Peace,
~Tuck


Helpful - 0
547368 tn?1440541785
Welcome. Sorry I'm tardy to your post. I didn't see it till just now.

First let me tell you how to begin a new thread. Simply go to the top of this thread and on the right hand side click on the green bar that says "Post A Question."

It took me several years - close to five - to begin feeling normal again after my numerous bouts of Sepsis in a very short period of time.  Mine too came from the kidney. However I had so many other issues and continued surgeries and interventions that I was never certain what made me feel so horrid and out of touch.

I'm sorry you are struggling so much. You're correct - most medical professionals do not know about  PPS, or Post Sepsis Syndrome. I encourage you to enlighten them. Go to the web-site and print off the information. Hand it to your physicians after you have read it thoroughly. Ask for their thoughts and a plan of action.

I hope you'll get an MD to listen to you. My heart breaks for you and all of us who have experienced PPS.

My Best,
~Tuck
Helpful - 0
Avatar universal
I think it took me nearly three months to recover at home from Sepsis. I had to use a walker at first and there were many things I couldn't do on my own. I'm Lucky I recovered so soon especially since I'm 65, have a chronic lung disease and MS. Besides from that, I still think about the realistic Hallucinations I had when I was uncontious. I'm beginning to think they weren't hallucinations. Please let me know if/what kind of thoughts you had if you were close to dying.
Helpful - 0
Avatar universal
Since the medical community knows so little of how it feels to live after sepsis, it is such a relief to find people who do understand.In 2012 my sepsis began in the kidney and quickly turned into septic shock. I was put in the ICU where I stayed on heart pumpers for several days. In many ways the days since then have been harder than the days in the hospital. I survived, but like many of you I wonder when (or worse if) I will ever feel awake again and live without pain. I truly feel like it is always 2 am. It is hard as a 41 year old homeschool mom of three to simply get through each day. Most of the time I do not feel "justified" in my fatigue since it has been so long since I was sick. As a result I have sought out neurologists, endocrinologists, rheumatologist so and even had a sleep study in order to find out what to do to feel better.  All of this to no avail. So perhaps it is just a journey of living with this new normal of trying to get through each day with a VERY limited amount of energy? Is that what you all have found? Sorry....I did not know how to start a new thread.....
Helpful - 0
547368 tn?1440541785
Hi Sue,

A tardy welcome to Senior Health at MedHelp. I'm sorry to hear you have still not returned to "normal."

If you read this old thread you know that I suffered numerous episodes of sepsis. It's a long journey "back".

As you certainly know there is a recognized condition called PPS, or Post Sepsis Syndrome. From that web-site I found the following:

"Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors. They are left with physical and/or long-term effects, such as:

    Insomnia, difficulty getting to sleep or staying asleep
    Nightmares, vivid hallucinations and panic attacks
    Disabling muscle and joint pains
    Extreme fatigue
    Poor concentration
    Decreased mental (cognitive) functioning
    Loss of self-esteem and self-belief"

There is a lot of good information on the PSS site, including a letter for health care provider. For those that may not know the site is called, Sepsis Alliance.

I have experienced many of those symptoms. I was also always wondering if I was developing sepsis again, should I see my PCP, will it happen again? Luckily I've over-come that fear. The fatigue was overwhelming for years.

However the sepsis was the result of a very traumatic MVA that by all accounts I should not have survived. I experienced PTS and was treated expertly for that - which I believe helped with the PSS too.

Have you tried therapy? It can be beneficial. I wish you the very best. Please keep in touch.

Take Care,
~Tuck
Helpful - 0
Avatar universal
i am 2 years post severe sepsis shock........
I still am not back to 'normal'......
Head aches...joint pain...MEMORY problems...sleep problems (what is sleep?)...FATIGUE (big time!)...
I belong to some groups that seem to help, a little. They listen!
Doctors and most nurses have NO IDEA what SEPSIS is and have NO IDEA, WHATSOEVER! On how to deal with post sepsis!!
I am not,the only one.....I just talked to a lady who is 10, yes TEN years post and still has problems!
WAKE UP OUR MEDICAL COMMUNITY!!!!!
Teach....maybe ONCE they will hear us!!!
Sue
Helpful - 0
Avatar universal
Have been home just 6 wks and thought I'd feel better by now. I'm still as weak and have trouble walking as I did in the Hospital. Spent 3 wks in critical care with all kinds of tubes in me. They told my husband more than once I probably wouldn't make it. I wouldn't wake up so they kept putting breathing tubes in my throat.. The dreams I had seemed so real and really scary.  I thought I only had a bad chest cold when I went in and before I left I was told I had a heart attack, kidney failure, gallbladder disease. It turned out I didn't have any of these. (Well I guess I did have what they call a stress heart attack) I'm thankful to be home and I'm lucky to have such a good support system. Mainly I thank God for bringing me back from what seemed like the dead.
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Avatar universal
I just found this form and have read all the post. My 78 year old mother is bedridden and can not even stand up anymore. Her ID doctor has told us she does not show SEPSIS in her blood tests. But she is still very weak and her mental clarity is not good. Its been over a year now. Does anyone know of a doctor in the Las Vegas, California or Arizona area that understands how to help post SEPSIS patients. The doctors we see now have no clue what is wrong with her.  Best Regards.
Helpful - 0
Avatar universal
My 78 year old mother had sepsis real bad also and almost died. We went to a ID doctor and he said they could not find anything wrong with her. She is bedridden and can not even stand. Can you post the name and number of your ID doctor. What state and city are you in ?  Thank you.
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Avatar universal
I'm sorry you are going through this.  I had sepsis from a routine hospital admission. I think I got it through my IV.  I was very ill with Lupus going in and at high risk for infection.  I spent 4 months in the hospital and one in the nursing home.  I lost eye sight in one eye, infected heart twice, neuropathy to both legs.  I was re admitted 8 times the following year because my health was so frail.  I am only 47 years old now in December 2014.  It's been two and a half years and I still feel very tired. I have numbness in my legs. My heart has a thickened valve.  I did not see any real signs of my old self for a year and a half. I actually feel I have post traumatic stress from the event.  Take it easy, it will get better, but you may never return to normal completely. You may have to accept and adjust to limitations.  Best of luck, Debra
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