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throat, ear and eye problems and feeling loss of control
14 Replies
chaplin - May 24

In another thread I have replied to others who have been having similar symptoms as me with a problem with one ear. Mine is my left ear - it feels clogged, sometimes I hear cracks in it and ringing - and it often hurts. My throat is also hurting. I have been told that this strange symptom is often seen in FM patients by my rheumatologist. I am going for a second opinion this week and let you know if the other dr. believes that this ear throat problem is related to FM. I have a lot of other symptoms too but this one seems to be the one most people feel may not be related. Do any of you get blurred vision in one eye too - almost as though you are looking through steam or fog or a smudged pair of sunglasses, often I also have dizziness. Just wondering. My dr. has sent me for a consult about this but this problem has stopped me from driving and has freaked me out. The pain is hard enough to handle but I am feeling isolated. I have two little boys and sometimes I feel like I am in another persons body - so much is going wrong and I feel like I have little control. My oldest is 4 and my youngest is 2. The 2 year old wants to cuddle all the time - which I can handle but my older boy keeps asking me when mommy will be better. I was really active with them and got sick really quickly. I am new to this and hope to hear that things will get better. How do people cope with things like this.
thanks for any input
Chaplin

 

gucci - May 25

yea im having the same problem with my eye its really annoying and the dizziness too i went to the drs for a check up as it was getting me down but my bloods came back ok so she said it must be a part of the fibro lucky me eh! its been really bad for the past week i get the pains in my chest and back and it makes getting dressed making a drink very painfull .i keep asking for medication to ease the pain and all they give me is cocodamol i have asked for another referral to see the rhemu but nothing come of it yet. i hope you feel better soon take care x

 

Fantod - May 25

Have you consulted with an ENT (ear, nose & throat) specialist and/or a neurologist? I would seek second opinions with both. Fibromyalgia (FMS) can cause blurry vision and require frequent changes in eye glass prescriptions. Based on your descriptions, I would not write all of this off to FMS without further testing.

I understand your frustration with not feeling well most of the time. We all have this in common. And yes, most of us feel like we are living in someone else's body and are no longer the same person.

I assume the rheumotologist has started you on some sort of drug regimen to manage your FMS symptoms. It is going to take some time to get the right medication and doseage to allievate some of your problems. You will probably be better but still not the same energetic person you were before FMS. Rest and plenty of it is very important with FMS. You are not getting the restorative sleep you need which does not allow your muscles to repair themselves. This causes more pain - its a vicious circle. The more you push yourself the more widespread pain you will experience. It is a delicate balancing act to figure out how far you can go before needing to stop. I would hope the rheumy has you on Cymbalta or Lyrica to help manage your pain. If not, you need to find someone else. You can go to the National Fibromyaglia Association website and ask them for a referral to a fibro-friendly rheumy in your area.

I think it is especially important that you reassure your 4 year old that things will get better. He may have concerns that you are dying or some other horrible thing is happening that you are not telling him. Information is always better than speculation. Try and find some other activities that the two of you can work on that requires less energy. Maybe some craft projects or puzzles. He obviously misses your playtime with him. Some quality time is better than none.

I hope that my comments are helpful to you in some way. Take care and let us know how you are doing.

 

cheri21157 - May 25

Boy you discribed the eye in a way I had been trying to descibe it to my drs. I also have the clogged ear and my throat bothers me too. Do any of you get the tingling sensation in your hands and fingers? My pain is mainly in my left shoulder and arm. Muscles ache and joints feel funny. My legs and other arm hurt but not as bad. My pain is manageable as of now. I have not yet been diagnosed with fibro yet but that is the way my drs are leaning. I go back to the dr on thurs. to get blood work results back. If all comes back ok I don't know what he will suggest or where I will go from here. All of my symptoms started 9 weeks ago and were alot worse in the beginning especially the fatigue. I still get tired and worn out but feel better now then I did 9 weeks ago. If this isn't fibro then I don't know what is wrong with me. MS has been ruled out according to my neuro,a ms specialist. All I want is to feel almost normal again.

 

JOEGIRL - May 25

Chaplin,, I can say one thing. I have the same problem with one eye and it seems to come and go. One day its blurry and the next day it's better. Weird huh? I got to go back to my eye dr. but I keep putting it off because I am afraid I might lose my d/l. I would just bawl right then and there if he said I can't drive. He couldn't find anything wrong with my eye and told me to come back in 2 months.Its really scary.
Sooner or later I will have to face it I guess.
I was having trouble with my ear and sinus and it went away so I guess I am hoping this eye thing will to. Hope things get better for you.

 

eriey - May 26

Hi Chaplin.
I have the same problems with my left eye. You might want to go to an opthomologist. I started having problems with my eye 4 years ago and they kept diagnosing me with pink eye, but I actually have reoccurring iritis. It's scary when it flares, but when it is not flaring it is exactly how you described. Based on what I've been told by my drs. they feel that the issues with my eye are another potential autoimmune disorder that hasn't completely flared. Whether or not this is the case I'm not sure.

The other thing I've noticed that hasn't helped my eye is Cymbalta. I started taking it about a month ago and one listed side effect is blurred vision. This has been a downside to already having issues with my eye. Besides that though cymbalta is really great once I got passed some of the more prominent side effects.

I hope you can find comfort and advice through this site. I know I have. Just keep your chin up and positive thoughts. It really sucks to have fibro, but my best advice is no matter how much pain I'm in I control my life, the fibro will not control me.

 

ALM - August 10

For all who suffer from the following symptoms:

Tingling in hands/feet
Exhaustion/fatigue
Sore tongue
Tinnitus
Gastric problems
Electric shock type pains
Burning sensation of the skin
Pain in the neck or shoulder (predominantly right-hand side)
Balance problems
Bowel or bladder malfunction
Numbness of hands or feet
Visual deterioration
Memory problems
Depression or anxiety
Muscle cramps
Insomnia

Please get your doctor to check for vitamin B12 deficiency. Fibromyalgia is closely associated with this condition but the link is rarely made. Don't let your doctor tell you your B12 level is fine if it is anything below 500. While still officially in the normal range, many people get all the classic symptoms of advancing nerve damage due to a deficiency at tissue level. As well as checking B12 level, you should also have both ferritin and folate checked and any deficiency immediately addressed. Ask your GP to let you try 'loading doses' of vitamin B12 to see if they help. Even if they don't, it certainly won't do you any harm. Vitamin B12 is not toxic and the body can handle massive amounts of it without any apparent problem. It just excretes anything it can't use in the urine. In the event that you can't get your doctor to agree to let you try the injections, you can buy sublingual lozenges (3000mcg - 5000mcg dose being the only worthwhile ones). Place one morning and night underneath your tongue and let it gradually dissolve. These are not as effective as an injection but it may give you an idea of whether the cobalamin is helping.

I can's stress enough that this treatment is really worth trying and may well put an end to the symptoms of many of you.

This treatment won't help everybody but I would put a bet on it that it will help quite a few of you.

 

axxie - August 11

Hey Chaplin, long time no talk, I'm sorry you are still having problems.

Have you ever tried Bonamine, not a prescription in Canada don't know about US, Meclizine belongs to the class of medications called anti-emetics (medications that prevent nausea and vomiting).

Meclizine is used to prevent & relieve nausea, vomiting, & loss of balance associated with motion sickness, radiation therapy, Ménière's disease, & other inner ear problems.

Bonamine consists of white, fruit-flavoured tablet that contains meclizine HCl 25 mg.

I have been using Bonamine from one of my eye who is blurred to the biggest pain, being dizzy and ringing in ear.

Do not take this medicine on an empty stomach and take only one pill at a time.

 

axxie - August 11

Hey ALM

Thanks for talking about vit B-12 but you need to know that when you have Fibro not only are you low on B-12 that the ailments come from nerve that are damaged and receptors being in overdrive.

I do have what is called Pernicious anemia, vitamin B12 deficiency in which the body can't make enough healthy red blood cells because it doesn't have enough vitamin B12.

Diagnostic Tests and Procedures is Blood tests and procedures can help diagnose pernicious anemia and what's causing it, often the first test used to diagnose many types of anemia is a complete blood count or a CBC, the CBC checks your hemoglobin and hematocrit (hee-MAT-oh-crit) levels.

I would suggest large dose of vitamin B12 pills, there is also vitamin B12 nose gel and spay that are available.

Sign and symptoms should begin to improve within a few days after the start of treatment. Just remember to always take a multivitamin to get the extra other essentials that goes with Vitamin B12.

I shoot twice weekly, Good luck, stay the course and use vitamins to help you out with Fibro

 

ALM - August 11

Hi Axxie,

I too have recently been diagnosed with PA, and after 13 years of serious nerve damage from demyelination of my spinal cord due to the deficiency, I am familiar with the type of neuropathic pain which is shared by PA and Fibromyalgia. I am appalled at the lack of knowledge and treatment for those who have this condition but, on talking with quite a few others who have been (mistakenly?) diagnosed with Fibromyalgia, their symptoms were greatly improved when they began taking realistic amounts of B12. Unfortunately, very few doctors will sanction enough of the vitamin to deal properly with their patients' symptoms. I'm one of the few who has been very fortunate to be given as much as I feel I need and I am hugely improved in six months. I've lost about 80% of my pain and am continuing to improve. My nerve damage is so long-standing that it remains to be seen whether it will ever improve, but it isn't likely, however to be mostly free from stabbing or electric-shock pain and tingling is brilliant. To achieve this, though, six months on I am still on an injection every three days.

I just think it is tragic that people with any condition like Fibromyalgia struggle on trying to deal with distressing symptoms and pain when there might be an answer to it.

 

JOEGIRL - August 11

chaplin, I just wanted to add that I had problems with my ear for a while and it went away but I still have problems with one eye. It comes and goes and its scary. I have not gone back to my eye dr. b/c I am afraid that he will take my d/l. If it gets to the point that I can't even drive to the store I will probaly just give up. I just don;t think I could handle being depended on someone to drive me where I need to go. Since you can't drive how do you handle that?Do you feel that you can drive one day but not the next? If its fibro related every symtom changes everyday. Goodluck and I hope you are feeling better today.

 

axxie - August 11

Hey ALM,

You are right about some of the pain being managed by Vit B12 injections, what I find, doctors have a fear of trying old and new medicine.

I was told that I had PA over 25 years ago, and I was promptly treated for it, with years, new doctors I would have to fight with them, that I had PA. Most dismissed me like I was trying to do their job, what I found, doctors look for other illnesses when there are none. Seem every patient should have the new illness that they picked up at seminars.

Like you wrote doctors have a fear and subsequently are harming people instead of helping them.

I have serious nerve damage from demyelination of my brain and lack of energy that no matter what, I cannot stay awake, unless I inject every 3 days myself also.

How much are your injection 1 or 2 mg?

If you search on google Vitamin B12 Injections there is an article from Josh Riverside, you may find it fascinating.

BTW new threat B-12 to treat Fibro and CFS (chronic fatigue syndrome. Hope to see you all there.

Sandrivers

 

ALM - August 11

Hi Sandrivers,

I inject 1mg in 1ml solution but I know that sometimes the injection comes in 1mg in 2ml solution (ie, same dose but in twice as much liquid).

I am in the UK so have my injections prescribed but my GP is fab and has been willing to learn about this condition along with me. I just don't know how others manage at all on the meagre amount they can prise out of their GP, especially when it costs pennies and is so effective. Seems they won't part with B12 yet would hand you anti-depressants without a single thought.

 

shula - August 13

Hi Chaplin, belive me you are not alone. The symptoms you are talking about ARE related to fibro. I have them too.Most of the time my ears are plugged, I hear like I am under water, they buzz, ring and sometimes I get a very sharp pain. As for the throat, it can get very, very sore.And lets not forget the dizziness, I get that too. So you see we are all in this together.Just remember, you are not alone, thank god for this forum and others like it,its the ONLY place where you are completely understood. Hang in there! Try to stay positive , I have young children too and I don't allow myself to get depressed, been there , done that.

 

axxie - August 16

Hi ALM, thanks for your reply and yes you are right about the vitamin B12 shots. I'm on 1mg every couple of days, just to keep up. If I forget to use it after a while my body will remind me, with this strange tiredness. I have lots of problems with brain mapping and shots do help.

The one thing I can say is, everyone can buy vial of b12 and they can go to their clinics and get their shots. I'm so used to it, now that my doctor trusts me to shoot myself. If I happen to be seeing her then I have her shoot me, and yes she keeps me on a tight leash by doing tests quite regularly with my vit b12.

I found that with vit B12 shots, I also take daily Ultra EnerForce a vitamin and mineral supplements, it's all vit bs plus iron, ginseng, spirulina, royal jelly and echinacea and it helps me have enough energy for my day.

 

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