62 Years Sufferings Of Familial Mediterranean Fever
Apr 2, 2008
I am a female 62 years of age who has suffered with FMF since I was a child of 8 years old - but not diagnosed until I was 45 years old. The FMF attacks mimicked several different medical conditions - first I had my appendix taken out at age 8 because of abdominal pains, then at 32 I had a hysterectomy because my "attacks" happened during my monthly menstrual cycle, then the attacks continued and mimicked gall bladder attacks - so I had my gallbladder out! At the age of 45 I was diagnosed with FMF when I made a trip to Israel and visited specialists in this area of expertise to finally get a diagnosis. It was a long time to finally get a medical diagnosis as most of my adult life I was told by doctors that it was stress related and that I should learn how to control the stress in my life!
I was hospitalized each and every month for at least 4 days because of the severity of the attacks and the dehydration of vomiting. Colchicine has kept it a manageable level for me and kept me out of hospital. After 17 years I am now getting side effects of Colchicine of numbness in my hands and feet. Now I have to find another drug that I can use in order to keep the FMF under control.
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i have been suffering from this debilitating Chronic disease all my life, I was diagnosed back in 2006 by a gene test. Ever since I was put on a disability pension. I suffer from recurrent episodes of high fever and pain in all my joints, my life is made of pain, and with at least twice a month sometimes even more often I get high flares.
nothing I was given by my GP that really helped. I may have few hours of the day at times that I feel normal, this is when I take advantage of the time to do housework chores. My husband who was my carer was there for me, helping me on my daily progress, since he passed away (15 month ago) on a stroke I have been suffering even more, emotionally and physically.
Since September last year, I have been chased by Centrelink, who's telling me that back at the time they accepted my application for the disability I didn't have enough evidence to become eligible for that and had had made a mistake, so they asked me to bring evidence from specialist to do so, it was the time just before xmas.
now everyone knows that to get appointments with various specialists take time. Before I was able to see one, Centrelink had cut me off, I have appealed, and now waiting for the tribunal decision. In the meantime I have evidence from some specialists.
but from the ones that I was gone through the government system to see a specialist in the local hospital, it 5 month for the first appointment, then 2 month to do ct scans and xrays. Now I've been waiting another 2 month hoping to hear from them before coming may which is my tribunal day in May 18. a Doctor called me this morning asking if I have left a message in the hospital about the results of the scans, he said, your scans looking fine, only the liver is fattened, nothing about my debilitating disease or if I'll have another chance to see the specialist so they can advice me about my FMF problems. I'm shattered and so disappointed, he hardly finished talking to me and his beeper was buzzing, he continued saying sorry, I have emergency and was gone. Where am I standing here? What kind of treatment is this, I've been waiting now for at least 7 month to see and talk to specialist and this is what I get. I need a written results for Centrelink and I'm feeling lost. I don't know what to do. This is just a joke. Please help me to understand and get some wisdom here as I'm lost in this government system.
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Back in January 2012 I contracted Glandular Fever and was sick for a couple of weeks. Ever since then I have had a sore throat on and off and nothing it doesn't seem to be getting any better. I get frequent mouth ulcers, the back off my throat is almost always red and patchy with ulcers and sometimes I even get the on my uvula.
I have seen my GP about this a year or so ago and was referred to a throat specialist who pretty much told me to wait it out, but it is very frustrating considering it's been over three years. I have also noticed that alcohol seems to make the problem worse, but being at uni I didn't have much chance to avoid it. My general health is relatively good, if I pick up an infection intend to fight it off quickly and don't get that sick. It's just this which is more frustrating than anything. The only other thing I would say is that I do have mild hay fever and always seem to wake up with phlegm in my throat so I'm not sure if this attributes to it.
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Since last three month I am suffering from Tinnitus – sound like pressure cooker whistling/ summer insect sound coming out constantly and loudly from my Right ear. I have no idea of actual reason of my present symptom of Tinnitus
2. Location of symptom - In right ear
3. What first started it off - May be after a cold and cough infection
4. When it's worse = in evening and night.
5. When it feels better = in day time.
6. My sleep pattern and details of any recurring dreams – Before suffering from Tinnitus I have silent sleep without any disturbance. As about dreams some time I saw flood water dream otherwise no issues.
7. What I am sensitive to – Heat, I don’t like summer temperature.
8. My state of mind – I am not an angry man, normal behavior can work in cold mind and can handle a situation by my brain without confusing (fears, anxieties, attitudes, moods, etc)
9. Any desires or aversions for particular foods, - like sweet items.
10. Details of any major diseases suffered in past – In fact I have normal body and health. I have not suffered any diseases. Oh yea, in 1994 I have small pox.
11. Details of any reactions to other medicines taken.- I have taken some homeopathic medicines of 200c power without guidance’s of a doctor, the medicines were published in a local news paper for acidity. I have a doubt that after taking those medicines without proper advice, tinnitus has attacked me. I consulted ENT specialist, took antibiotic and medicines, but no result.
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I previously posted about my night sweats but now I have a new symptom. Mostly in the morning, my forehead and sometimes my face feels hot but I don't have a fever. In fact my temp. will be a degree below normal. My body will feel a little warm but not as much as my face and forehead. Does this sound like mild hot flashes?
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I am sure many of you will have heard of the Mediterranean diet and some of you may have even tried a supermarket or popular magazine version of it. Please set all those experiences to one side.
In preparation for writing about the Mediterranean diet for Patient UK, I went back through all the scientific papers on the subject to find out exactly what the diet was; what science has shown the health benefits might be; and what you actually had to eat. The research stretches all the way back to the 1970s and there doesn't seem to be any dispute within the medical/ scientific community about the benefits of the diet.
Here's a few key things I found out:
It is to do with the proportions of things you eat (meat, veg, oil, nuts, wine...) rather than any particular recipes or ingredients. You don't need to cook any Greek, Italian etc dishes at all.
There are plenty of things to 'snack' on.
You can buy everything you need to follow the diet in your local food shop. You don't need to join any clubs or take any medication.
The health benefits include: reduction of risk of developing -> heart disease, type 2 diabetes, high blood pressure, cancer, dementia... (indeed many of the diseases everyone is worrying about)
Following the Mediterranean diet has helped people attain an ideal weight (and there are a number of scientific papers on this).
I was so impressed by what I read - I started the diet myself.
Anyhow - if you are interested, you'll find everything you need here:
how to follow.....
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I'm less than 10 days into my being back on statins and already some of the familiar side effects are creeping back. I was hoping after being off of them for almost a year, that it would take longer to be pulled back down. First, the mild muscle aches, then feeling more tired than usual at the end of a work day and in the past 3-4 days, a mild uncomfortable feeling around the stomach area. I'm just hoping I stays mild and tolerable. In the past I have gone on Nexium to deal with the stomach issues-which is effective to a degree. Add a little Tylenol for muscle pain- that's statin therapy with 20mg of pravastatin.
I want to finish whatever time I have left feeling better than I know I will living on statins and have pretty much decided to go on the Mediterranean Diet. My hope is to try getting my dose cut to 10 mg of pravastatin, follow the above diet and do some exercising - which will consist of walking and cutting the grass. But, I'm wondering - does anyone think this is doable? My latest numbers are 307 TC, LDL 239, HDL 53 and Triglycerides 74. My numbers got this way from eating too much of the wrong foods during my "statin-break". Not my brightest moment. My Dr. said he has serious doubts that even 20mg will get me where "I need to be".
I'd like to think the Med diet will work and that I can get there with 10 mg. Anyone ever pull this off with numbers like I have shown?
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My husband has this condition and has been on statins for some years now. His levels are now good, he hardly drinks but his diet is awful - and always has been. Basically red meat, pastry, cakes and spuds, preferably with fat of some kind. My diet is good and all the right foods are in the house and available. This year he has been feeling unwell - aching all over and very tired. His weight is good despite the diet though. He has lived 7 years longer than his father, and I would like to keep him for many more. I am wondering if the statins may be causing the problems and whether the condition can be managed by diet and if so how the heck do I convince him to change? He is due to see his doctor next week.
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I have been diagnosed with Familial Hypercholesterolaemia at the age of 5, after around 30 years of battling with doctors over my diet. Up until now, my combined cholesterol has never gone below 7.0 (without statins which I took for a few months around 5 years ago - it went down to around 4.0), and doctors continually insisted that my diet was at fault.
After another round of insisting that I take statins, I refused and was sent to the lipid clinic, where they looked at my history and proudly announced that my diet was not at fault and it was hereditary.
They then insisted I go on statins, as in their words, I have nearly 50 years worth of <fat> lining my blood vessels.
They did no cardiac tests or ultrasounds or stethoscope on my neck, etc., to find out if I was "furred up", and they then referred me back to the GP.
The GP didn't get in touch with me, so I made an appointment to see him, where he put me on a low dose of steroid.
I asked him about whether I should find out if I WAS at risk of heart disease before he shoved me on them, as in my mind, if my cholesterol had been so high ALL my life, then why did I not have any of the associated symptoms of FH, such as early heart disease, fat deposits on eyes etc?
Also I have reduced thyroid function (not reduced enough to be treated under the current guidelines however).
So, a couple of weeks later, at a pre-op for an upcoming gynae procedure I am to have, I mentioned about not having my heart looked at in years, and the kind nurse did an ECG and listened to my heart with a stethoscope. I was told my heart was ok.
What I would like to know is, would that "OK" on my heart health be a good reason not to take statins, or would further tests need to be done to ascertain whether I am at increased risk of heart disease - other than my cholesterol level.
I have read recently that if your heart and vascular health is OK, it doesn't matter what your cholesterol level is, it will still lower your risk - is that correct?
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I am interested in finding other people who have inherited high cholesterol. I was diagnosed when my late mum had several strokes and me & my 5 older
sisters were screened.
It was just my eldest sister & me (the youngest) who had inherited it. 2 of my sisters 3 daughters had it, and both my daughters. Does anyone else have such a strong family history of inherited cholesterol?
I live in UK & am currently on Ruvastatin 10mg.
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wanting to contact others who have the same condition. Sometimes it is genetically related or not.
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The symptoms first started 9 years ago when I found out I was pregnant and were quite severe throughout my pregnancy (symptoms such as runny itchy eyes that feel dry at the same time, very fast flowing runny nose that drips, sneezing fits, loss of smell, headaches, lack of energy). the symptoms then began to fade away as the years went by but have came back with a vengeance over the past 12 months, it makes working hard and stops me from doing normal day to day things as I feel like going and locking myself away.
I will be visiting my Dr in the next week to tell him that it is not hayfever that it is infact rhinitis and I want something done about it.
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I had unprotected oral sex when she was menstruating (tampon used) and also received oral sex. I am not sure with how many people she sleeps with. for intercourse condom was used. Condom was tested for no breakage later.
Now after two weeks I have epididymitis inflammation and hence lot of pain on my left testicle. I have given urethral swab for test of chlamydia and also urine for test. I am waiting for results. I am taking ciprofloxacin and it already helped reduce pain on my testicle after two doses.
now i have been having mild fever (37.5 - 38.4) ever since i started having the pain (two weeks after the exposure). also i have 3-4 rashes , dark purple (only one of them is big to the size of a bed bug) between my shoulder and elbow on my left arm. rest of the body seems fine.
irrespective of the probability that I may have caught chlamydia, is there any worry for HIV?
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Sometimes when I get fever, I take Cataflam. Now, I have baby and he has fever and I am wondering does Cataflam help for baby fever. I did not take my boy to the doctor yet, because I know that is normal for baby to get sometimes fever and I do not want be paranoid mother. My boy is eleven months old.
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My HIV test is negative after 5 months of possible risk but in 7 month I have itchy rash with little red bumps on back and also have flu but not fever, however there is a cold dry weather as well. Is this a possible symptoms of getting HIV?
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My husband suffers from Hay Fever quite badly. He takes one Hay Fever tablet in the morning and then another at night. He then has his nasal spray which he takes everyday as well as eye drops to stop them from itching.
Also to help keep the pollen off his skin he will take 3-4 showers a day.
I have tried to convince him to at least try the Hay Fever injection but he says it is too dangerous and can cause heart problems.
The fact that he doses his system up on the tablets, sprays and eye drops everyday can't be healthy either!
Does anyone know of where I can find information to try and convince my husband that what he is doing isn't that great for him either?
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I m 27 weeks pregnant and having 100 fever is it dangerous
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I am 32 years old male. I was diagnosed with prostatitis. What does it mean? Anyone have prostatitis? I also have fever. Can antibiotics help me?
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I was pregnant with my first child when the following happened;
- at 27 wks began to have multiple lymph nodes swollen along both sides of my neck
- low grade fever which was controlled by taking a paracetamol
- dark urine color
- at 28 wks I was admitted to hospital and started to have severe oedema
- blood results showed my uric acid, creatine and alk phosphate, ferritin, c-reactive were high - with WBC critically high
- Hemoglobin, RBC, platelet, Albumin was low
- I had difficulty breathing (constant heart rate of 135), a scan of my heart showed it was lacking liquid
- blood pressure was fine
- Baby was taken out via c-section at 28.5 weeks where my condition worsened before starting to get better
- in the month after baby was taken out I continued to have low grade fever and developed a rash
- My blood work returned to normal in 2 months after being admitted to hospital with steroids
The doctors never found out what the cause was, please advise if you have heard of a similar case?
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Does anyone ever experienced having a fever and just not feeling good. Today I was feeling bad running a temp of 100.1 with a high heart rate of 110 and just feeling tired weak and not myself please can you ladies let me know why postmenopausal symptoms make you feel sick run down tired and give you hi heart rates and make you run a temp of 100.1 Feeling bad all day so confused about all this just want to cry and hide away
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I had an upper respiratory issue a few weeks back and am pretty much over it, but a week after the worst of it I started running a low grade fever almost every evening. My face and neck feels really hot like the heat is just radiating off it and I want to fan myself. I otherwise don't feel bad, not like I usually do when I have a low grade fever when sick, I just feel hot. My normal temps runs around 97.5 and I know that temps are lower in the mornings and can go up in the afternoons but I have never had it like this. It has been about 98.6, 98.8 and today it has been 99.3. But like I said, it isn't like a sick fever, and it is mostly my face and neck area that feels so hot. It starts every afternoon around 3pm.
Does anyone else experience anything like this? Could it be related to perimenopause? My cycle is really messed up right now.
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