Hi, zorf: maybe it's my computer but I also wasn't sure how many comments we could post under one question. Hopefully no one minds, I was just trying to make it easier for us all.
rnneedshelp: glad you are getting extra supports. what is gulf war syndrome?
I had a crappy night; couldn't sleep because of the tingling. I basically only sleep when exhausted. The tingling started to act up more again; possibly because I might have overdone it yesterday. Anyone have suggestions how to sleep???
In the next day or two can everyone check in how they're doing? It's helpful to all of us to see how this is all going. Thanks!
Are we gonna make it like Rocky? Tingling 2 the Revenge? My suggestion on how to sleep....is already known! Ok, I don't want to transform all of you in a bunch of drug addicted, but have you tried a tranquillizer just once? Just to see whether your tingling diminishes the moment you calm down?
@rnneeedshelp: as my "colleague" has written, you are anxious over the symptoms, not the opposite, and the same is for all of us. I can tell you that when I read in Internet about GBS or the Gulf War Syndrome I started feel terrible and got tense all over the body....I stopped reading that stuff, because it actually made me feel worse! Better to read here. In these days I am ok, I hope it can last.
I just had a follow up appointment with one of my doctor's today. As I had mentioned in my earlier posts I am already taking an ammino acid high potency complex which is really helping reduce my anxiety and also allowing me to sleep. When I mentioned about the continuing muscle weakness, she has suggested A.O.R. brand magnesium Malate Renew which is used for fibromyalgia and other neurological problems. All of these are totally natural ways to help the body to heal itself. She tested my reflexes again and assured me that this should run it's course and leave no residual effects. It's always so great to be reassured, because this week it really feels like my muscles are going into spasms more than they were before. Anyway, stay strong everyone and take care!
Hi, My name is Shelley, I am a 43 yr. old female and I had the H1N1 vaccine on 11/3/2009. I have had many of the same symptoms as all of you. I am very weak and even typing this is difficullt. I have gone down hill in the past week. My autonomic NS has been acting up also. I go from constipation to diarrhea on and off. I am trying to get in to a new neurologist at Mass General Hospital. They said hopefully before Christmas. I hope to not get any more weak before then. I did go to a neurologist last Friday who said I have polyneuropathy. I have started to go much further down hill though. I have read all the posts here and feel for all of you. I hope we all recover sooner than later. Shelley
Yes, Francy, I like the "revenge"! ha ha
I actually slept not too bad last night. I took liquid calcium/magnesium at dinner time as recommended, had a warm bath and I applied this lavender, rosemary, cinnamon, arnica, eucalyptus cream called "dream cream" all over and that included my sinuses; which drained like crazy (I didn't even know they were clogged either!). It was the best night in five weeks. Not my usual snore-a-thon but still pretty good after the many sleepless nights I've (we've all) had.
I just got back from the naturopath and she gave me a "Myers Cocktail" by intravenous. I feel pretty good and "warm". She also got my blood and spinal tap results from my medical doctor. She said all results were good-normal but my white blood cell count was borderline high, which means that my immune system was working big-time to counter-act the vaccines.
Yes, I can't look at anymore of these diseases and conditions online either because my heart starts racing and I feel sick. Until one of these doctors give me a "firm" diagnosis I am staying away from finding out more.
Lindac790: my naturopath gave me vitamin c powder with amino acids that you mention but I've just been taking it for 2 days now so it probably needs time to work. I will ask her about the Malate Renew. Thanks.
Shell0726: hi, sorry that you had to join us here, but glad you found us. What did the neurologist say about polyneuropathy? recovery time? any instructions for follow-up? did you get any meds? Seriously think about going to a naturopath for extra health support, get someone to call and drive you there. Also, go see your medical doctor if you feel that you have worsened. I got the flu shots on Nov 5th and there have been days that I felt that I went "backwards" and then I would improve again. Look at our original forum (Tingling after Swine Flu Vaccine) where there are over 150 comments for more feedback and suggestions. Take care and keep in touch so we know how you're doing.
I might try the magnesium renew. I get nervous to put anything in my body it is so messed up right now. A previous doctor told me turmeric is supposed to reduce inflammation- I may try that also. I have been reading all your comments- they poisoned us. I don't trust the neurologist who diagnosed polyneuropathy.- he put me on Elavil.(for nerve pain) I have gone downhill since I saw him last and he has not been much help. I am trying to get into Mass General- they are supposed to have great neurologists if you are in the North East. I live in New Hampshire. I feel so bad for the woman whose water broke and pray for her and her baby. Did you have muscle pain and weakness? My symptoms didn't start until a couple weeks after the flu shot. Thanks for your post.
I too like coriecl had trouble getting to see all the posts in the other forum. Glad there is a new one started now! After numerous trips to see doctor's I went to the hospital to the emergency to get tested. The doctor said he didn't know what's wrong and that he never saw anything like this in medical school. He tested my strength, reflexes, and poked me with a sharp point on a tongue depresser. I also had a blood test. Everything turned out fine. Yesterday I felt really good. I think I did too much though cause today my arm near my arm pit is really sore (it feels like sore muscles) and my neck muscle is sore too. It has been 10 days since my shot. The tingling and numbness has mostly gone away except in my feet now it's just muscle soreness....
Dear Shelley, I think you need a good, proper neurological visit, inclusive of all the necessary exams - I really hope you can get one before Christmas, so you will be able to spend yor holidays without any worries. As you see, we are all very similar, but at the same time very different, each takes their own time, some of us have recovered relatively quickly, others are still there in the middle of it. Every time you start feeling better, you have to expect another little worsening and then better again, up and down. Muscle pain and soreness is typical: I have always had that together with the tingling. For Iceskater: my neck and shoulder muscles ached like mad during the worst times! But that's also given to tension and anxiety: usually a very hot shower (with the water jet just aimed at that point) managed to relieve the situation.
Now I must go, don't give up and stay tuned! Bye.
All of this is taking a toll on my mental state! One day, I'm OK. Next day, it's all I can do not to cry. I'm so thankful that I have my medhelp friends! Because you are truly the only ones that understand what I'm going through.
Shelley: Yes, I've had muscle pain and weakness. Tingling and muscle weakness started 5 days after the vaccine for me. However, my biceps were sore and I had fatigue immediately after. I remember having two dizzy spells and a weird feeling in my stomach like something in it dropped right after the vaccine. I hope you get into see the neurologists that you want soon. Please don't forget to keep us posted as to what they say. And don't forget one of us is usually on here everyday for support for each other so post anytime.
Iceskater: I work in a hospital authority with many doctors and let's just say some doctors are okay, others barely passable, and some are great. So don't worry about what one doctor says. If you are still concerned, ask to be referred to a neurologist.
Francy: are you all better now? or do you still have tingles?
Last question: is anyone's feet more sweaty than usual like mine? weird symptom I know.
Oh, I forgot to mention your arm pit pain, I've had the same pain. It's likely your lymph node(s) that are clogged and need to be drained. I went to a massage therapist on Tuesday and had a lymphatic massage; however, you can google lymphatic drain massage or lymph nodes and find some ways to drain it yourself if you can't see or wait for a massage therapist. Irritatingly enough, my lymph nodes -this time both sides- are sore again today, which means they need to be drained again...so just know that you may have to do this more than once.
Hi, I rec'd the vaccine 12/9 and 30 hours after started with the numbness / tingling / and just all over cold. Has anyone eles been cold ? Feel like cold water in their vains ? My tingling/numbness moves about - feet / legs, hands/arms, chest, head etc... Here it is 12/13 and still doing the same thing. I have read things on other sites that say it's more then likely a transit immune reaction.. does that sound about right ? I aslo have Fibermyalgia and wonderd if anyone else had a auto immune condition? I am going to see my GP tomorrow to make sure we can start ruling out the scary GBS. It's been a long 4 days for sure and it seems like it's going to be a long few weeks.
Thanks for all your post. I don't feel so alone reading them. My hubby is not the most supportive about this because he was against the shot to start with.
Sometimes I wonder what husbands are for...except making children! Be brave and be patient...you are only at the beginning! Usually the first two weeks are the worst (so it has been for me), then it starts going better, but it takes at least a month (if not more) to say bye-bye to everything! I've been told it is a sort of auto-immune reaction, i.e. the immune system over reacts after the shot and strikes your nerve system, so perhaps the fact that you already suffer from an auto-immune illness can indicate that you had more chances than others to get this side effect. I don't know, as far as I know there's no one else here with a previous auto-immune illness.
@coriecl: sweaty feet!?! That's great coriecl, we could make a contest in this forum and give a prize to the weirdest symptom of the month! I'm not sure about sweat, but I remember a period when I had tingling mostly during the night and my feet literally BURNED, they were so hot!! Then it passed off after a few days, like everything else.
I'm ok in these days, last tingling was on Tuesday the 8th, hope it lasts.
It was one month ago yesterday that I had the shot and I am happy to report I haven't had any tingling for about 5 days. The muscle pain seems to be subsiding, especially in my neck and shoulders. It was pretty bad for a while, so shell0726, just hang in there because it will get better in time. I think the more stress and anxiety we feel, it causes the body to tighten up. Also, reading too much about the shot can really make the symptoms worse. This is a supportive environment here where we can all relate to the symptoms and offer positive advice.
To: clgleaves, my husband didn't get it either, since he was against the shot in the first place. It makes it hard, but you'll get lots of support and suggestions here.
Also, I remember being freezing cold and then very hot on and off for about 2 weeks after the shot. That has also subsided.
Better days are ahead!!
I've been reading these posts for about a week now, and finally decided that I should post since my side effects are still happening. I had the h1n1 on 11/14 and the regular flu shot the week prior. My tingling started on 11/27. At first, I thought I had the flu or some kind of virus, because I had cold chills and a little nausea w/ it. But then i had the same thing happen about 5 days later. It would come and go w/ a few good days in between. Now I am tingling everyday. I went to the doctor after my 2nd episode and they thought it was just some kind of virus and of course, it couldn't be the vaccine, according to my doc. They ran lots of blood tests, which all came back normal. I'm scheduled to go to a neurologist mid January, but in the meantime I am doing lots of supplementation. Also, I have 3 small children to take care of (5,3, and 8 wks), so this really scares me. I was 3 wks postpartum when I got the shot, so I'm wondering if my immune system wasn't run down to begin with, and therefore made me more susceptible to side effects. I am also breastfeeding, so I'm scared to take any medicine.
I thought I would continue to post--I am about 37 days post vaccine
Mostly completely better.
Yesterday I twisted my ankle so I got tingling in my foot 9but both) but I am also 27 weeks pregnant and they say that is common too
otherwise doing well
all my neuro tests were normal
I hope this is something that passes for all of us
docs say it will that the immune system will just correct itself
I had burning/crawling/prickly/tingling sensations--very bad
benadryl helped a bit.
but it went away by week three or so...
Thanks everyone that replied back to me.. this is my first time writing on a forum so I am not sure of Forum ettiquite :) Went to the doc this AM... said that it just an auto- immune reaction since the tingles / pain / numbness / cold is "jumping around" and stops and starts. Also said that since I have an auto-immune problem that I need to try to avoid sick people and stay as healthy as I can, rest etc and let my body correct itself. They did tons of blood work and will have the results by the end of the week. THe cold feeling is actually better this afternoon, but have pain and tingles in my back ? Normal right ???? I am trying really hard NOT to read anything else on the web about GBS and side effects. I think I will stick to this site.
I am glad I found this website. I had the h1n1 shot on Oct. 26th and 6 days later I developed muscle pain in thigh. The next few days developed muscle twitching and then the tingling started. It has been 43 days since symtoms and still not gone. They start getting better going to my feet and legs then travel to my upper body some of it feels like my muscles are quivering. Anyhow I saw a neurologist a week ago and he said he didn't think it was GBS. He did alot of blood work and not sure of results. Now I am waiting for the nerve conduction test. I am sorry you are having the same symtoms but I started thinking I was the only one. I it very nice to know some of you are getting good news and symtoms are going away. I hope I get the same results before I go insane from the symtoms. I will post what my doc. says as I get tests and news from him.
I guess i am having a rough night. Did anyone else feel worse at night and when they were tired ? Have worse pain or tightness in legs ?
Newcomers: welcome and sorry that you're in the same boat as us! If you haven't seen our original post "Tingling after Swine Flu Vaccine' it might be a good idea to muddle through those over 150 comments for suggestions, feedback, and how we have progressed through this.
Francy: yes, it's funny, sweaty feet! Glad to hear that you stopped tingling about a week ago. Congratulations! I'm sure it won't come back now.
Lindac790: thanks for letting us know how you are. Congrats too on being tingle free.
Bunchof 5: some people have recovered quickly from this vaccine reaction, and some others, like myself, are still feeling the effects. So it just takes time. Hang in there like the rest of us.
Isleeping: thanks for letting us know how you are. And congrats on getting better.
Okay, I hit a button and it posted my response before I was ready!
Ana2662: hope you made it over here from the original forum. Sorry to see that you had to join us but there is comfort in knowing we are not alone and that it's not in "our heads".
I am still having a bit of tingling in my left foot but I have very achy neck now. I will have the nerve conduction tests and the EMG test on Wednesday. Can't say I'm looking forward to it but glad to have it done to see what's going on. I am 39 days post-vaccine.
Keep in touch everybody. For those that are recovered, maybe you can let us know what therapies, medication, etc. you feel worked for you. Thanks!
clgleaves and Francy66- Thanks for all your posts. I had a little bit better of a day today. Little less tingly- still fatigued. I do have auto-immune disease. I have an illeo- anal pouch- (it is on the inside of body- you can look up if interested for Ulcerative Colitis. I also have Ankylosing Spondylitis- Arthritis of the spine and can affect other joints. I have had some digestive issues going along with this. Some times constipation sometimes diarrhea. Now- to give you all a laugh. My neurologist wants me to got my gastro guys to look and check everything out in there. Well. the last time I went to my gastro this summer he couldn't get the scope in because I have an anal stricture from surgery 20 yrs. ago. Even know we think some of this is autonomic nervous system dysfunction- I had an auto-immune reaction similiar to this two years ago and they could find no gastro issues wrong. Well- Merry Christmas I get to have my butt hole stretched (anal dilation is the medical term) Friday by a rectal surgeon just so they can look in there. My husband and I just have to laugh and ask "Is there a Christmas special- two for the price of one?" "Also, Please don't Super Size me!" The jokes can go on and on. Feel free to crack some if you want. I shouldn't have said crack. Hopefully tomorrow will be a better day for all of us and thank you lucky stars your butts are all normal! Shelley
Hello everyone.. It was great to have a chapter 2 to this topic because it has been affecting so many of us... It is now 3 weeks since post vaccination - I was vaccinated for seasonal flu and H1N1 on November 23rd...Since I work at the hospital, they highly recommended it.. It was the worst mistake I have taken... I still have tingling sensation in my back, but it is not as severe as before.. My other symptoms of tingling sensation on my left arm and leg and reduced almost completely.. However, I am really concerned about the tingling sensation I feel in my spine...In the beginning, I had the GBS concern.. NOW I have the MS concern... I am also in school and feel that my head becomes overwhelmed very easily now... I am still very much scared and wonder how a vaccine meant to help you - actually hurt me...I saw a Chiropractor and felt a little better, but please be cautious with the chiropractor you choose...We need to all continue this discussion and UNITE to prevent this from happening to others..
Hi I had the vaccine 13 days ago after which i had one night with bad flu symptoms then 2 days later I had pain going down both of my arms making my wrists very sore.i still have stiffness and pain inmy arms but now it is in my ankles and knees and my muscles feel like they are contracting.I have had some tingling in my face and legs but at the momement this has subsided.Haven't slept the past 2 nights mainly due to pain and everytime T wake up I feel worse.I am very scared and can't seem to stop crying I just want to go back to bafore this as I have 3 children and I don't know what to do just feel helpless.I have my first doctors appointment tommorow as I kept being told this was normal and would settle down.Very worried about GBS although my dad is a doctor and keeps telling me my nerves have become inflamed as a reaction to the vaccine that was more common with older vaccines,and as long as my reflexes are ok not to worry.He can't say how long it will last the pain is the worst thing then the anxiety time is passing so slowly especially at night.Has anyone had the same pattern of symtoms? as everyone else I know that has had the jab had a sore arm and that was it hence why I went ahead trying not to beat myself up about it but i wouldn't wish this on anyone.Anne