Hello. I’m now 11 months out from my terrible botox experience. I’m looking for people with similar experiences as me who would be willing to let me give their information (or their situation, date of injection, diagnosis etc to start) when contacting attorneys. Following detrimental botox injections I was hospitalized with botulism as well as autonomic dysfunction and respiratory failure on exertion as well as abnormal heart rhythms. After 3 months of home oxygen I was then diagnosed with heart failure. I’m still on medications to help and have an array of other side effects. 11 months out I’m positive I have permanent damage and I’d like to pursue this. Please email me privately on here. Thank you.
3 year update
Hi it has been 3 years since my injections. As I’ve mentioned before some of my major issues were the vestibular migraines meaning that I got dizzy and had head painI all along the right side of my face and head. I had eustation tube issues, loud humming in the right side of my head , anxiety swollen lymph nodes, neck pain, eye pain, pressure in my head . About a year ago I also had sudden hearing loss in my right ear .
I was put on 2400 mgs of nueronton and 100mgs of Nortriptylin . Today most of my symptoms are gone. I no longer have severe head pain, dizziness or blurred vision. After getting a steroid injection directly through the eardrum my hearing came back. I no longer have anxiety or swollen lymph nodes. I do however still have tinnitus but it’s a lot lower. I still have to take the nortriptylin or my dizziness and migraine symptoms will come back. I also still have eustation issues but I hardly notice it anymore.
I believe my body reacted to the Botox by attacking itself. I notice that Botox is putting out there more and more side effects, I am glad to see that. I am like 90% back to my normal self . Thank god for the medication. I would say I felt better at the 1.5 mark maybe 2 year mark. Please hang in there it does get better with time. You may have some symptoms that don’t go away but the majority for me have cleared up.
I tried cleaning my eyes last night with Sterilid. I use warm water to soften skin then use a q tip with eye cleanser to get the waxy stuff out that sticks to my skin. It’s not working so I need to go back to the doctors. My vision will blur more over time. I also have collagen or fluid with bacteria sloshing and pulsing up and down my body 24/7. This makes me so angry that this stuff is all through my body and nobody cares! My husband has been supportive and a few friends, but the doctors act like this is nothing and I really am not getting anywhere. Does anyone else have these issues. My problems are from Juvederm Voluma XC. Thanks
Hi, I was injected with Juvederm Voluma XC in Jan. 2014. I had an indentation and crease that was repaired with Juvederm in Feb. 2014 and March 2014. The filler migrated to my nose area and my doctor used hyaluronadase to dissolve it in May 2014. I was wearing glasses 12 to 15 hrs a day and wasn’t told not to wear them. The doctor used more hyaluronadase June 2014 and it dispersed through my entire body. I own a hair salon and have been doing hair for 40 years. I never called in sick. I was not comfortable wearing my contacs or glasses so I took a year off work to find a doctor to help me. My skin tissues pulled around my right eye when doing any close up work and a muscle pulled in my right forehead when I cut hair, it was very painful. I have rosacea in my eyes and face and my legs,stomach,and back are swollen and inflamed. I have problems swallowing and burning in my stomach and chest.I am still looking for help after 1 year and 9 months. I am seeing an endocrinologist tomorrow because my lymphatic system is not working properly. I found out that Juvederm Voluma XC is crosslinked hyaluronic acid produced by Streptococcus equi bacteria. This bacteria is a disease found in horses. Strangles Disease. I am still living a nightmare but I haven’t given up. I will not give up. I realize this is a Botox Site and I read Katiedaily’s posts about Juvederm Ultra Plus and thought I would give this a try. Thanks so much for letting me share. I am so grateful.
Hi all, I want to share my Botox experience to warn others.
I received Botox for the first time 2 weeks ago. Having injections around my eyes, between brows and above brows for cosmetic purposes.
This is my Botox diary below..
Botox injections at 12 pm
Bruise to one injection site on right hand side of my temple/crows feet lines.
Black dots in front of eyes for a few moments after the Botox
went home and rested.
Hot and cold tremors and awful feelings of anxiety by 6 pm onwards
Clammy hands and feet
Couldn’t eat all day after injections
Anxiety remained and got no sleep. Dry mouth
Pain to right side of temple
Anxiety hell/Deep feeling of dread
Twitching right eye
Couldn’t eat all day complete lack of appetite
Slept well tho
Slight Anxiety but much better
Twitching left eye – black dots in front of eyes twice
Dry mouth – peeling inside of bottom lip
Was able to eat lunch & dinner with effort
Not feeling like myself & low
Anxiety almost gone
Still have dry mouth
Still don’t feel like myself
Didn’t sleep well, woke 3 times during the night with hot sweats, bed soaked became a bit anxious after waking each time
From day 5 till now (day 14) symptons have gone, anxiety has gone but still get twitching in left eye and black dots in front of my eyes when in bright sun light.
I am hoping this was it for me, a short spell of hell, & never to return. I will never have Botox again even tho the results are good those few days of hell knocked me for six I have never experienced anything like it in my life and never wish to again!
Hello to all, I am from Spain and received 2 injections of botulinic toxin(BOCOUTURE from Merz Pharma) I think in the USA the name is Xeomin. I didn,t know it was Bocouture I sign my consent for Botox. I was desperate to find a solution for my eustachian tube I was injected twice with only one month apart for my patulous eustachian tube. After my first injection I notice tingling in my hands and 7 days after the second injection, I suddenly woke up red all over and a terrible pain descending from my neck down to my spine till my feet, I had muscle pain all over and felt like the flu had hit me. I called the ENT and said it had nothing to do with the botulinium toxin and has never helped me. I went by myself to a lot of doctors at no avail. My blood tests showed I had a high level of Protein C reactive, and hormones and C3 and cholinesterasa all messed up. This was in December 2013, now it is one year after and I have muscle twitching, nerve pain,muscle spams all over my body. They have decided that I have a small fiber neuropathy but they say that this is the 1st time they see such a thing and my feeling is that they don,t think it is BT related although is obvious. I feel alone and every day is a struggle. after Reading your posts I am releived to see thay I am not the only one. My lawyer says we can not sue them if we don,t have a proof. The only thing I do is to tell everybody about it and warning not to put such a toxin in their bodies!! In Spain there is not much help for health alternatives. If you could please help me on the nerve, muscle pain I would appreciate it very much. I wish this nightmare stops one day for all of us. Hugs to all from Spain P:S: Hope you understand my story, english is not my mother language
I noticed this new development in the last week or 2 and is quite scary .The weird thing is that the blood pressure and heart come almost perfect …Urghh hard to make sense of any of these symptoms but just wondering if anyone had this happening .
I have posted my story previously.
I am 9 weeks in after having 15 shots of botox in my head, neck and shoulders for chronic pain.
As I have antidepressant withdrawl induced CFS and Lyme, I am already very drug sensitive.
Since I had the major reaction to the shots, I have been trying various medications to help. Every drug I have taken has given me a hypersensitive reaction, a ‘stimulating’ one. From Naproxen to gabapentin to nortriptyline. These stimulating reactions although they made my pain hyper would get me through a day and allow me to do things, though my body would ‘drop’ again afterwards.
The anticholinergic effect on my body means my muscles have turned very soft and weak, making my lymphatic system not work properly (puffy eyes and swollen feet), AND My Neck AND Shoulder Muscles Drop SO Much THE nerves around my head and face and neck pull downwards, ringing ears, hisding actually,with such a force my migraines and eyesight are getting worse daily. As I have fibromyalgia, I have severe twitching around all my nerves on my body as my muscles have become so weak.
After skipping around taking gabapentin for a few days I noticed I was getting dry skin and spots mire and my face is so dry I was burning in the sun.
I then tried to go back on nortriptyline a drug I have taken last year. Both nights I took it my migraine became so sharp, then the ‘drop’ the next day. On the second day of 10 mg, my skin was dry, paper thin and had a red rash the looked like someone had thrown acid in my face! I used to get very dry skin from Colestyramine or charcoal because it would absorb fluids from my gut, make my pain worse and again, throw my nervous system into disarray
I stopped again.
I KNOW this is due to my nervous system being whacked out and over stimulated.
I just need to know how I can get better!
Is there anything I can do to counteract the muscle weakness I am having? A supplement or drug?
It definitely is my nervous system all over the shop.
I don’t know if my reaction to nortriptyline was a proper one: the redness/dry out I would normally only get from taking a large dose of a drug and it affecting my autonomic nervous system that badly.
The dry skin is something new and it’s just getting worse. Lack of oxygen and nervous system exhaustion?
I am having a good diet when I can eat: protein, veg and complex carbs (I have only just started eating these again as I am so drained it’s the only burst of energy I get)
I don’t know what supplements to take
I have had a lot of Epsom salt baths also very drying.
Please can someone offer advice?
I’m not making the paper dry skin thing up.
I am 9 weeks in and back in my wheelchair and am having severe depression and anxiety because of the effects too and have thoughts of ending it all. I am in touch with mental health.
I should say that I have been trying to detox, have acupuncture and Lymphatic drain age if my head and neck and am not sure if this us also contributing to making it worse. I did a very stimulating body brushing on Saturday to try and get this poison out. I did AC every few days at the beginning.
Thank you for any help xx
Especially on muscle regeneration and nerve repair
After 5 years of saying “NO” to Botox for Migraines I agreed to try it. It was a bad decision, I have regretted doing it because I had an acute adverse reaction. It shut down any normal breathing and I got so sick, attacking my respiratory system and infecting my lungs and sinuses. I felt like I have been literally burnt with chemicals. My lungs burn, my eyes burn, my insides burn, my skin burns and I am either sweating or feel chilled with a fever. The paranoia & anxiety beyond explanation, the panic attacks come on out of the blue day & night. Nightmares and frantic night sweats are very frightening. The doctors are eager to give you the Botox, but have no answers or help other than more medicine that is like adding fuel to a raging fire. After 8 months & 8 rounds of antibiotics and steroid treatment I got thrush all over my insides and under my arms I had to take diflucan to clear it and I have had a major flare up of eczema all over my face which will not clear up. Been to lots of specialist & it’s costs me a lot of $ and put me in bed for months. I have had chronic illness’ diabetes, asthma, fibromyalgia, migraines and seizures for years, but they are nothing compared to this adverse reaction to Botox. I think Botox is a BAD idea for anyone! I wish I had continued to say “NO” But sadly I am living with the remnants still in my system. I hope it will end soon, it makes me sad that it has consumed my life. I literally have been trying to recover. There are more adverse reactions to mention in one entry. I hope that relief is in the near future!
Hi, this is my first post so sorry if it is long. I am
A hemiplegic migraine sufferer and have permanent visual symptoms. I decided to have Botox in my forehead in may 2012 and it didnt relieve my headaches but I had no side effects apart from eyelid twitching.
I then opted to have Botox in the back of my neck in august2013. 2 days after this I ended up in hospital with a severe migraine, my right side of my face,arm,mouth and chest was numb for 18 hours and I was sick.I also had a high white blood cell count and low blood pressure but doctors didn’t think it was Botox that was the trigger.
Since hospital I have got permanent tremors in my head/neck/left arm and left leg with right sided facial weakness and right arm weakness.my left eyelid twitches along with my right cheek. Also I have tinnitus since july2012 which came along with vertigo and I can hear blood rushing in my neck and ear (feels like a heartbeat)
I’m unsure if this tremor and weakness is the Botox or migraine or something else??
I would really appreciate any input.
I seem to recall reading a thread where a few people reported extreme muscle tightness in their neck, shoulders and back. After sorting some of my medical documents and moving my arms more than I usually do, I know find I’ve lost more feeling in my arms and the traps arae of my back feels frozen and so heavy.
Can you direct me to the thread or share your comments about the muscle changes at 10-12 months? And how long this goes on for?
Thank you and healing wishes to all of you!
I was wondering if any of the ladies on this forum have had a mammogram that shows multiple calcifications, or little white dots, which are a sign of inflammation.
Now that I look back on it, I wonder if this was a sign my body was reacting negatively to Botox going systemic?
I started getting Botox in 2007.
In 2009 I had the mammogram. The calcifications were not in clusters which was a good sign I did not have cancer. However, I had a core biopsy to rule out cancer, with one of the best local radiologists (yes, that was nerve wracking!)
Here’s where it gets interesting: I was told that they don’t see this many calcifications or this much inflammation until a woman is 65-75 years old. And I was 42. I was very physically fit, and very active in my work and family life. I always ate a low fat diet, and never touched drugs. Why did I have this inflammation?
I continued to get Botox (regrettably).
Then in late 2010, the first signs of botox toxicity began with increasing fatigue. One year later I was off work due to illness, and was dealing with insomnia, extreme anxiety, trouble swallowing, multiple chemical and food sensitivities and struggling to breath.
So, I would like to know, has anyone else had a mammogram showing inflammation? I remember thinking to myself, if this is showing up on a mammogram, is the rest of my body inflamed too?
I feel this was likely one more sign that Botoxhad become systemic.
Looking forward to your brilliant feedback as always!
I have had Botox three times previously and don’t believe I had any side effects. The fourth time I had Botox was a different story. I awoke the morning after having Botox the previous evening with a twitching thumb. I now have muscle twitching randomly all over my body and although my twitching thumb has subsided, my toes and other fingers now randomly twitch. I also have feelings of anxiety, although I’m not sure if this is as a direct result of the Botox shots, or just because I’m now just generally worried about my health.
I have been to see a neurologist (great guy), who tells me that he thinks the Botox has stirred up some auto immune problems in my system – nothing too serious, apparently. I am taking B12 cream and methyl folate tablets. My body seems to have a problem absorbing B vitamins… Still suffering with symptoms though. It appears that it is going to be a long time before I rid myself of them.
Anyway, I’d be interested in knowing what other people are doing with similar symptoms.
Thanks for reading!
On the 5th Jan I stopped taking Endep – I slowly weaned myself off and my last dose was approx 6mg. I have been incredibly sick ever since. I am just wondering has anyone taken Endep and come off it? Did they have any withdrawal symptoms?
I have had intense jaw/face neuralgia, anxiety only on waking in the morning, my teeth are buzzing again, return of the sore throat/mouth ulcers, my ears are feeling blocked again – they are burning and itchy also, I have the car sick/fatigue feeling and am back to crying from exhaustion/frustration on a daily basis. The most concerning return symptom is the intense neck/shoulder pain – to an intensity that I haven’t had since approx the 12 month mark (I am now at 23 months).
I am sure this must have something to do with the stopping of the Endep????? My Dr wants to put me on Lyrica which he says serves the same purpose as Endep but without so many side effects (when I was on the Endep I didn’t really have that many side effects from this drug though). I read your post Soloist and I feel your pain about the relapses – I just feel defeated at 23 months and still dealing with this. This week has seen the return of Botox thoughts consuming my everyday existence.
This sounds bizarre but for 2 weeks in December I felt so good – slight jaw pain every now and then and some twitches but really feeling good about life – this is probably what prompted me to come off the Endep.
I have seen some of the discussions about auto immune responses to the injections – do people think their symptoms are more Botulism related or auto immune related – I am just confused and worried again. Katie you mentioned reading a book by a young girl who had an auto immune response – you didn’t say how the book ended – did she recover?
I keep hoping that fact that we haven’t really got any members past 3-4 years on here with severe issues means that eventually all of these things do resolve themselves and people get on with life…..that’s what I am going to keep thinking anyway. Cameron has once again been my life line – the person who continues to be there no matter how low I get – I can’t even put into words how much this means to me – I only wished he didn’t have to put up with all of this :(
I am really really struggling. I am now in Month 32…was hoping to start 2013 with high hopes…that this would be the year to really make some progress. Unfortunately I am having yet another what seems to be the start of a major relapse. Granted….I struggle every day and am only 30% of what i would call my normal functioning self…..so I at times feel that I am in a perpetual relapse. But I am now experiencing a significant downturn in my condition over the past week. I am petrified. I am having some symptoms that I haven’t had since the start of my relapse. The intense vice grip head pressure is back ….the intense eye pressure….the jumping at any sound…chills/sweats…nausea…the intense nerve pulsations …the dry mouth and eyes is back…the tingling down my face…intense fatigue even upon walking across the room…and the ANXIETY is excruciating. It shoots out of my brain and into every cell of my body. I can barely breathe. I feel like I am back at Month 2. I am exhausted. I can’t do this again. I told myself if I got hit with another round of this instensity…I just couldn’t do it. It is too hard. This stuff has somehow been resurrected to full force…like it has found new life…the intensity just as severe as it was in the beginning. It is too much. I am losing my strength. Every minute of the last 2 days has been like being plugged into a electrical outlet. I am back to shaking, tremoring and crying uncontrollably. I am praying to God for help. I can’t live this tortuous life anymore.
I was hoping at this time to say I am recovered but I am not. My initial though was I would be fine within a year. I was healthy, fit and eat well. Didn’t many of us think this?
I no longer have anxiety or brain fog. Swallowing isn’t a problem either. My muscles spams and twitching is much less.
What remains is spine pain and intercostal pain. My pelvis is still having spasms and I still have sciatica. I also have stomach issues on and off and my ears are full most of the time and ring. I have dislocated bones from spasms that are so violent. At times the pain is so bad I just shake and want to pass out. I feel like my body is going into shock.
Over the past to year I have pretty much tried everything.
Acupuncture ( helped my head issues the most)
Epidural and trigger point injections- helped at first then seem to make things much worse.
Medication- I prefer Lidoderm Pads for pain and Flector for swallowing, and Aleve. Antihistamines for the itching and rashes. I carry an Epi pen just in case. Muscle relaxants as needed.
I have tried other meds but nothing really helps.
Physical therapy and chiropractic has helped the most. I have also had many tests, like many of us have. All negative.
My symptoms started with full like symptoms and a rash and hives. I stopped breathing and had difficulty swallowing, anxiety, muscles pain ,spasms,depression,burred vision and most of the symptoms on the list as well as some added ones. I am still alive and fighting.
I am starting hyperbaric chamber treatment tomorrow. I will keep you all posted on the results.
If it wasn’t for the support of the people here, I don’t think I would make it though this. I am sorry for all your struggles and hope that we all will someday come back and say we are RECOVERED!
Typing this on I phone so apologies for mistakes! Just wanted to say that I have been so happy to have found this site as it has given me hope as I’m sure it has to you all, thanks everyone :). I first found it about a month ago but have been too frightened to look again. But now I feel a tiny bit better so I thought I’d post my story.
I’m 32, from Manchester uk. I had restylane lip and Botox at the same appointment. Had redtylane twice before no issues, never had Botox before. At the time I was suffering from a bad back (diagnosed as a bulging disc 3 weeks post Botox, not related had already had it for 4 weeks) I’d already had a few weeks off work with back in a new highly pressurised job so I had to be in work when the hell started. Thought all was fine then 3 weeks after injections my left arm went numb and I felt like my strength had gone in this arm. I thought it may be back related. Went to hospital had ECG etc, sent home with ibuprofen. I then started with the horrific anxiety and felt as though I was going to die etc. i thougt i had so many forms of cancer etc. very dark times. started with nerve pains in right arm then same thing (subsided a lot now, just muscle weakness) This followed with intense pressure headaches and the burning feeling (just comes and goes but nowhere near as bad) I had gone back to work in new job and couldn’t cope but managed to get through it with beta blockers and diazepam (carry them with me just jncase but no linger take daily) This followed with swolllen glands in my neck (still there)and something catching when I swallowed (still there) no actual issues swallowing though. Dizziness (got a lot better). Intense pain around uper back, armpits and breasts. Breasts became so incredibly swelled, lumpy and painful a week before period. To the point where I couldn’t wear a bra. Burping, blocked left nostril when lie down, acid reflux, ibs like symptoms with swelling on left side of abdomen. These all happened within about 4-5 weeks post injections. I went to the doctors twice a week. Convinced myself I was dying. The insomnia was horrendous. Anyway, went private to see a neurologist. Now have low blood pressure which I never had before. My blood tests are fine but strangelyin the very low variance of normal for blood clotting. My blood would not clot if I had an accident etc. Had some anti toxin blood test that came back fine after I mentioned botox link. Not sure what it is? Have had an MRI on lower spine, cervical and brain. After I failed some tests he thought I may have ms. But not so. I would probably pass those now as the numbness has dissapeared somewhat. Neurologist listened but does not believe Botox theory. My doctor has been quite understanding about it all.
I am still having all my symptoms checked to rule anything sinister out. But I thought it complete madness that I had about 15 uncorrelating symptoms over about 3 weeks. Its crazy. I thought about what had been different as although I’d hurt my lower back (now better)I’d never had any of these symptoms before and was super super fit. I exercised 5 times a week, a bit of an addict really. Now I lift my arm and it’s tired. Good news is I’m off any pills except ones for acid reflux and sinus etc.
I have had 2 periods, waiting for 3rd to see if the breast armpit swelling comes back etc. I’ve had them checked 3 times for lumps etc, hormone tests too. Waiting for camera down throat, ultrasounds for abdomen etc. I don’t have anywhere near as bad anxiety when I started this. I no longer feel like I’m going to die. I have slept 4 nights in a row with no pills. I am fearful that things may take a turn for the worse again but I guess this is how it is. I have slight vision disturbance in left eye and muscle twitching and strange sort of shudder sensations. This is all in my left side.
I am eating healthier and taking superfood shakes. I had a massage, days after I was in agony, not for me. I could feel the food passing under my ribs in my bowels, so it must all be inflamed. I’m looking to start a raw food diet in January to see if that makes a difference. I immediately quit diet coke. I drank litres of it each day. That stuff should be illegal! I am now sticking with accupuncture and hoping it works. My therapist is completely supportive of Botox theory. Some friends have looked at me as though I’m mad when I mentioned this is why I’m Ill. They think I’m exaggerating! Get in my shoes.
After I felt a little better I tried to run and swim. It’s too much. I also tried Pilates, my arms would not support my body etc. this was a few weeks ago, so I’ll try again and let you know how I get on. I get really bad neck, back, chest (muscular) pain
Luckily one of my best friends is an occupational therapist in nhs (high up now and charges for neurological privately) for stroke and neurological rehab. She orders it to be administered medically hundreds of times a year. She has been through whole thing with me and when I made the Botox link she was slightly skeptical as she said it didn’t travel. Then when I showed her this site….she believes me. She was looking at doing a study on Botox use medically next year with her nurses and neurologists and is going to see if they have had any reportings like this. It seems medically it much stricter. They use a machine to find the exact spot in a muscle that it should be injected. I guess the caveat is this people already have neurological symptoms! She is thoroughly getting stuck into this by coming up with theories etc and trying to help. She has given me a sort of rehab programme that she gives to stroke/me patients. I am like a little project for her! I’ll try it for a few weeks and if I see results I’ll post it all on here too.
I will keep you all posted. My main message is that although I still have symptoms and I don’t know yet if they are something else or what can be done, my anxiety has eased a lot and the numbness has passed. I don’t feel as bad as I did say 4 weeks ago. Having lots of pills with me from docs helps as I know I can take them if I need to! Many people at work have said I look a lot better and that I seem less on edge etc (they don’t know all symptoms or this link etc, I was at risk of being fired because I hadn’t completed my probationary period, oh and even my boss who I report to in Belgium said I looked a bit better). I didn’t think people could tell as I tried to keep it under control.
Anyway, sorry for long post. I’m trying to keep positive. Love to you all :)
Sorry for the rambling and thanks for reading.
Hi, I’m 4 days post Botox injection and feeling really unwell. Why is Botox allowed to be sold as a ‘safe’ drug? I had 75 units in my forhead to smooth out a frown line. When I had this done I felt that it would be okay and I did it as a ‘take time out for myself activity.’ Having three children is busy and you don’t always get to do that. I’m hoping that in time recovery will come but I know it will be a process as my brain feels really foggy due to neural pathways being blocked and my whole body is weak. I was very healthy before this but I feel this is a huge setback to my wellbeing. I feel very upset ubout what this drug does to people. I talked to a phone counsellor about the the devastation I am feeling and my concerns about how this will impact on my family. She talked me through a breathing meditation and encouraged me that there is a place in this world for ‘small beginnings’ and to be very kind to myself while i’m rebuilding my life slowly. Any words of encouragement here are greatly appreciated. I would love to here some success stories along the road to recovery.
I remember previous posts regarding gallbladder pain. I think I am experiencing this. Woke up during night excruciating pain under breast that spread around back to front. Lasted a short time, was ready to go to er and it stopped. It happened one time before but didn’t last as long. Today I am left with a pain in back right side seems like lung area. Just returned from vacation and am wiped out and have chills up and down spine and hot sweats all night. Wondering if those with GB had to remove it or does it settle down like other symptoms and come and go. Also having a lot of belching. Afraid to go to Drs , no longer trust them.
I am one year post poisioning this month and still have many issues. Months 7/8/9 were easier and now I am a mess again.
I am having a very difficult time. It is 2:30am and I have been awoken in pain regularly at this time now for the past week. Sleeping hasn’t been an issue for me until now. I am at 19+ months. I am also very scared, feeling that my symptoms are getting worse.
The good new is I no longer have, anxiety, that was only with me the 1st few months. I am now longer having difficulty swallowing, depression comes and goes depending on my symptoms. My stomach isn’t as bad as it once was. I no longer have diarrhea and nausea on a daily bases and I have gained back the weight I originally lost. My stomach is still not 100% yet. I had eye dryness and vaginal dryness, that seems to have improved as well as the dental pain and mouth ulcers. My blurred vision has improved but I now get ocular headaches and disturbed vision more then I had over the past months.
Here is what is worrying me the most. I am twitching more now then I have been in the past few months. It wakes me up at night. I have had twitching though most of this but it did clam down for awhile but it is back. In the past few months the nerve pain in my arms, legs , traps, neck and spine has increased . I have increased muscle weakness and have returned to physical therapy. My muscle contractions are worse and so painful I no longer feel I can manage them. It is difficult to sit the nerve pain is so bad. Nothing really helps. Originally my spasms were so bad I had dislocated my arm a few times and twisted my ribs and vertebra and pulled in my tailbone. Nothing new has dislocated in a few months, thank GOD. I feel it is moving into my head . My ears are more full and I have more visual disturbances, more regularly as well as headaches that I had in the first few months, have returned. The quality of my live is quickly decreasing. I cry more then ever. I haven’t had hives in 2 months but now have more of a shingles like rash. I often get this before a new nerve pain comes about.
My doctor had recommended Cymbalta (sp) but I have tried so may things that have not helped. I do not know if I want to try another drug or put anything new into my body. I also have all kinds of drug sensitives since this has all started. I pray daily for all of us.
I still can’t believe this is happening. I am starting to loss hope of recovering and just wish there were more stories of recovery.