I've had cfs for 25yrs at the moment I'm having a very bad relapse i would like to no if anyone has the weakness in your head my brain stem has been weakened so my nerves system is all over the place my. Body shakes inside pain deep in the back of my head been told that is coming from my brain stem have poor concentration and cry a lot.
View 45 RepliesI’ve experience dizzy spells for the last 15 years; perhaps less than 10 attacks from 1997-2011. I’ve had noise in the ear and plugged ear always the same one ear. I had multiple ear infections in childhood and have had a few head traumas. Sometimes my hearing can improve. I'm not sure if this has anything to do with cat allergies?
In 2004, I had a MRI show 5 bulging discs in my low back. L1-5, SI. I’ve had 2 car accidents hit on the right and left, no whiplash though.Recently, Dec – Jan 2012 severe Vertigo 5 attacks in the last 10 weeks, the vertigo went away after the 6th week, the loss of balance has continued intermittently with an impending threat of vertigo(PTS) I've have severe neck pain, jaw pain, cranial pain, headaches.
The ENT doc(s) have determined that I have Meniere’s (hearing loss, tinnitus, and dizziness) this is based on symptoms and hearing test. They have prescribed diuretics to remove fluids. The first time I took the diuretic I had adverse effects.Not satisfied, I pushed for an MRI. Good thing; it showed 5mm cerebellar tonsillar ectopia on horizontal MRI, vertical MRI can show much worse. The neurologist working with the ENT, said it was mild and unremarkable (typical response). CTE can considered dangerous in most of the online information that I’ve found especially if it becomes a Chiari malformation with the development of syrinx - a buildup of cerebral spinal fluid (CSF). The symptoms of CTE can be as follows: dizziness, nausea, hearing problems, ear problems, and loss of balance, head and neck pain, pressure in head (cranial). Now I have been reading about Occipital Neuralgia and the symptoms, which include dizziness. I’m getting confused, and frustrated. I’m losing hope in this effort to find the answer to my problem. I immediately improve with chiropractic adjustments; the problem is I cannot afford to go to the DC every other day. I’m requesting a second MRI (vertical) and a second opinion to rule out (hopefully) CTE or Chiari Malformation. At this point I would choose to have a surgery in hopes of a restored heath and vigor as opposed to taking medications that are supposed to address symptoms because they can’t find the solution.I used to be a person who went to exercise daily, I have a healthy diet, and drink plenty of water. I’ve never used recreational drugs. Drink very little alcohol. It’s really hard to feel like I’ve had a stroke or I’m debilitating. On a good day I am nausea free and almost feel normal, I feel my heartbeat in my ear,it feels like my brain and eyes are delayed not tracking when I move or like I’m moving inside my head, sometimes I feel pulled to the left, like I might fall over, last night I felt like I was going have another attack of vertigo. When I start to move with some momentum I all of the sudden feel uneasy and begin to feel a vestige of nausea Can anyone on here make some suggestions?
Is it possible to seroconvert after 11 weeks? After an unprotected risk I have tested negative upto 8-9 weeks including 2 4th generation test At 4 week's and 8.5 weeks and a 3 rd generation at 8 weeks,now a. Past 11 weeks I have vaginal thrush and mild shingles! Could I be seroconverting only now? Or would my immune system be weakened by hiv that fast? Also is it possible I have had 4 false negative tests and will test positive at 3 month test?
View 10 RepliesI am just wondering whether anyone has had genetic testing to rule out causes of fatigue? Myself and my brother both suffer with extreme tiredness and I'm wondering if it's worth asking for it to be investigated down the genetic route.
View 9 RepliesI have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
View 4 RepliesI'm a thirteen year old girl with an unhelpful doctor who literally doesn't want anything to do with me because I'm 'hard work' to diagnose. My family believes it's chronic fatigue syndrome, fibromyalgia or both. So that's the home treatment path I'm taking. My symptoms have been going for 6 months now and they are diarrhea, nausea, joint aches, headaches, fatigue, confusion, dizziness brain fog, tenderness, weakness and muscle pain. I've been tested for crohn's, ulcerative colitis, hypothyroidism, hyperthyroidism, parasites, dysbiosis, virus, infections and celiac disease. I also have eczema, restless legs, irritable bowel, anxiety and gastroesophageal reflux disease. I'm not under any stress at the moment.
View 3 RepliesJust wondered how other people cope with the family holiday. Being out of your normal routines and in a new place perhaps. What do you put in place to help you cope?
Being at home knackered is one thing but being in a caravan, apartment or hotel etc. is much different. Having to be mobile and do holiday stuff with the kids, can and is an overload for my system. Do you avoid going away because of things like this or is it just me?
The last 10-day holiday we took has taken me 4 months to get over! (Moreover, I was still feeling rough after 4 months…) I know I am lucky to be able to grab a family holiday, but I do wonder at times, if it’s more harm than good taking a holiday with ME/CFS.
I am currently applying for jobs, but I am unsure answer yes or no to the do you have a disability? question. I do have CFS, which does impact my life, although I am able to work. What do you think?
Went to see my gp yesterday and told her about my heart beat readings I've been having recently of 115 just to walk downstairs, 124 to walk upstairs, 135 to walk downstairs on a bad day. My heart rate goes up from 74 to 105 when laying down to standing. She took my heart rate as a sat there and it was 98. She's now sending me for an ECG. She thinks it might be to do with the sack or lining around the heart? She told me the official names but I was silly and didn't get her to write it down. Now I can't remember what she called. She said she has seen cases before.
View 3 RepliesI was wondering if anyone else diagnosed with ME is constantly thirsty? I've had all the blood tests (and have been diagnosed with ME), so diabetes is omitted. It seems to be worse on an evening and I'm always topping up my fluids with water and herbal teas-so plenty hydrated! It's not my worse symptom, but just wondering if it was common?
View 28 RepliesJust wondering whether people get any unexplained bruising or get easily bruised? I get them quite often and it's worrying me. My rheumatologist said that it can happen as our body is over sensitive.
View 12 RepliesI am a 32 year old female. My question relates to Exercise Intolerance. I am very unfit and am wanting to get fit for the first time in my life but whenever I start even an easy exercise program, I get really wiped out. I usually feel okay after my "workout" (barely a plausible term) session, but feel extremely fatigued the next day. Which interrupts my program. This can be very irregular tho, sometimes I can do quite a bit and feel fine the next day. I had bulimia, starting at age 17 for 10 years and am wondering if this is still the effects on my body. I have no other side effects from the bulimia. Apart from that I have suffered Chronic Fatigue Syndrome, but these symptoms disappear if I don't exercise. I have had my heart and lungs checked out, blood tests etc, all come back fine. Can someone please, please shed some light as to why I get so exhausted following even a small amount of exercise. It doesnt seem to matter be it cardio or weights.
View 1 RepliesAnyone smoke with CFS? I dislike drinking a ton so I was wondering if anyone smokes marijuana? I've seen online it's good for it and it doesn't make it worse... Anyone ?
View 13 RepliesHi everyone, I was diagnosed with CFS/ME a year ago and since having surgery last November it has got so bad that I am unable to return to my job I am only 22 and it's really making me upset.
I have had all the blood tests available and all came back negative apart from today my doctor called and said I have a vitamin D deficiency and has given me 3 months worth of medication. Has anyone else with CFS/ME got a vitamin D deficiency? Also did supplements help your CFS? Or even cure it? How long did it take for you to feel better?
I had stuff to do today that I could not leave. I have since had several dizzy spells. I get these when I do the school run. Has anyone fully passed out?
View 9 RepliesAs we were chatting about teeth earlier on the spectacles thread I thought I would start one specifically about ME and teeth.
I think I have mentioned this before, but when I saw my dentist a while ago and told him that I had been diagnosed with ME he informed me that if ever I needed to have a local anaesthetic injection he would give me one which doesn't contain adrenaline ....... because anything with adrenaline is a complete no no for ME sufferers.
One of the theories about the cause of ME as some of us know, is that for some reason we are unable to 'switch' off adrenaline as a 'normal' person would and as a result we just drain all our energy, and the only way to regain it is by resting. I am convinced that there has to be an awful lot of truth in this theory.
Several months before I was diagnosed with ME I had extensive reconstructive work done on my upper teeth (my generation didn't have fluoride toothpaste and many of us subsequently have soft teeth), and I often wonder if the dozen or so adrenaline injections triggered something. Also, I had a lot of amalgam fillings removed, and I wonder if the lead from these was released into my system during the drilling.
Who knows - but hopefully one day we will find out what causes this wretched illness :?
So folks ..... no injections which contain adrenaline.
I am currently waiting to see CFS specialist hopefully in the next two weeks. I am b12 deficiency and also have underactive thyroid. Since the end of February I have gained around 1 stone. I have an extremely fussy diet as I don't eat Red Meat, Fish or Pasta. My diet is mainly Vegetables, Chicken and Potatoes but have gained weight like nothing on earth. Before all this CFS i was doing exercise classes twice a week but now can't get out of bed most of the time. Anybody else have similar experiences? I still go for a country walk at the weekends when I feel up to it but apart from that I'm at a loss at how to shift the weight. My GP has been monitoring it but he said there is nothing we can do at the moment.
View 4 RepliesSeen a pain doctor who suggested I get mr thyroid checked although it has always been normal but he said I should get my parathyroid tested my gp has only ever done 2 test in his 25 years of being a doc.
View 1 RepliesI see most people lump CFS and ME together and they are not the same disease. They should be referred to separately as many of the symptoms of ME are not the symptoms of CFS. You can't die from CFS but ME can be a debilitating disease that can get progressively worse and CAN lead to death. So whichever one you are suffering from, what helps you feel better with CFS most likely will not help you feel better with ME. I am definitely on the upswing with my CFS. I walked almost 2 miles this morning and am feeling better every day. I think I am on the road to a total remission again. ME patients really have to monitor their activity levels so as not to cause themselves to go backwards and aggravate their condition. Don't lump these conditions together because they are totally different. Think of them separately and they need to be treated separately.
View 59 RepliesHave any of you begun to recover or recovered significantly from CFS?
I want to get a feel for if recovery is age related (do younger folk recover more quickly?) Or if it's related to how badly you suffered from CFS in the first place.
I've that broadly, younger folk get better quicker. I've also heard that if somebody has had sudden onset, maybe caused by a virus, then they are more likely to recover in about three years.
What do you know?
I am 33 and I used to be so energetic, liked to work out 4 to 5 days a week. But last year around February my life changed completely! After trying some over the counter probiotics for stomach issues like constipation my life went downhill. Ended up in the hospital 3 times for palpitations, could NOT sleep, diarrhea, shortness of breath, feeling my body freezing then super hot, feeling like I was going to pass out etc etc you named it! My doctor run ALL kinds of test and no answer. He only gave me antidepressants and high doses of sleeping pills. I cried every night because I knew I wasn't depressed but nobody knew how to help me out. Eventually 3 months passed not sure how I made it but started to feel better. Around October I started to feel so exhausted, light headed, low bp, sleepy and going to sleep at 8pm every night to feel a little better the next day, this was just no life and again here we go to my doctor and more test...and nothing! I am a true believer of Homeopathy/ Herbalist medicine so I decided to try Chinese medicine anyways I had nothing to lose anymore and to my experience the recovery has been AMAZING! It's been a month and I can say that I feel much much better. It is kind of hard to really find the help for CFS. (I never took the anti depressants). Please don't get discouraged seek help and always talk to your doctor before trying anything else. All I can say is that I found an amazing Chinese herbalist that is helping out feel better!
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