Hi, my doctor just recently told me he thinks I have fibromyalgia. I have gone thru lots of tests and nothing shows up for the cause of body pains, etc. he
wanted me to go see a rheumatologist for it or the diagnosis but they won't see me because they say they don't see fibromyalgia patients and I am
currently waiting for 2 days again for a phone call to have me go see the right doctor. Meanwhile I feel alone and I am scared. My symptoms do match up for
this thing except there's also something else going on but it includes my head, my thinking, weird sensation on my rt eye and numish sensation on my rt
side of my face that comes and goes and also on my tongue. Someone told me it sounded like fibro-fog (just to be sure it wasn't a stroke, my doctor had me
to get an MRI last week & seems everything is fine). something happened 3 times already, with last week's episonde being the 3rd time, where I freeze,
my thinking stops kind of, its as if someone thru something in and it didn't allow me to think as normal, it lasted for a little bit and I was then allowed
to continue doing whatever I was doing. so are these symptoms of fibro-fog? Can fibromyalgia affect the scalp and face with numish feeling like it does my
body sometimes? Pain is normally what I feel and now this? It would help me sooo much if I knew all of this was part of the same thing. I would really like
comfort from someone out there with information. Thank you. =)
what symptoms are fibro fog?
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 hope in az |
what symptoms are fibro fog? |
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Posts: 1 (05/29/08 09:42) |
Last Edited By: hope in az 05/29/08 10:06.
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KaSuRe |
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Ray of Sunshine
Posts: 2714 (05/29/08 09:59) Ray of Sunshine |
Those aren't my symptoms, but it might be of others. Mine is mostly short term memory problems, confusion, inability to read a book and understand or
remember what I just read.........stuff like that. Loseing things is big on my list too. I am sure you will get alot of answers here. Welcome to Clouds! Sorry
it has to be through fibromyalgia, but you will find alot of love, understanding and information here.... You have come to the right place. Prayers for you,
Kathy
Kathy
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hope in az |
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New to Clouds
Posts: 2 (05/29/08 10:10) |
thank you for your reply, we are getting ready for our day & I thought I'd edit a little what I wrote & there was your reply. I am Christian too,
so thank you for your word of encouragement.
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SUinIN |
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Ray of Sunshine
Posts: 2134 (05/29/08 11:21) Ray of Sunshine |
My fibro fog is more like what Kathy described. However, your numbing feelings could be caused by a trigger point pressing on a nerve in your neck. I have had
this before and had different parts go numb. I wouldn't just blame everything on fibro though so continue to try to get answers and help for other doctors.
There are a lot of doctors that still don't believe in us but more and more are starting to understand this condition.
Good luck on your search for answers and it is nice to meet you, even though it had to be through this dreaded problem. Su
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Mary Gw |
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Angel in the Clouds
Posts: 3690 (05/29/08 04:39) Angel in the Clouds |
Welcome to Clouds. I have Chronic Myofascial Pain Disease, not Fibro, so can't anxwer that one, but others will. If you are diagnosed with Fibro be sure
to buy the book by Devin Starlanyl titled FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN. It is GREAT!! My internist and physcial therapist had no idea what I
had either. Took them 2 years to get me to a rheumy that knew right away what it was!! God bless.
 
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Shirley |
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Angel in the Clouds
Posts: 35657 (05/29/08 06:19) Clouds Administrator
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nrse |
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Ray of Sunshine
Posts: 1070 (05/29/08 08:22) Ray of Sunshine |
my "fibro fog" is the problem remembering names of people- so be prepared to have me call you "girlfriend" if we get together....to
compensate, i call everyone 'girlfriend"- and yes, i even caught myself calling a guy friend "girlfriend" once-lol.......occasionaly i also
have trouble finding a word i want in conversation and i always say that is why God gave me an English teacher for a husband
 take care, lynn
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hope in az |
thank you guys for all the replies. = ) | |||
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New to Clouds
Posts: 3 (05/29/08 10:27) |
thank you for all your replies. I was so happy to see all these replies when I signed on just now. I still didn't hear from my doctors today & its
kind of hard to go thru the day knowing or feeling something is not right but how good it is to know there's people out there who care and take the time to
see and reply to someone like this. I know and trust in God that I will get the answer and the diagnosis. All my tests show fine. I tested negative to
lupus, arthritis or any inflammation but I have certain spots or areas that hurt sometimes more than others but its becoming more of a daily thing since
September and sometimes it feels like the areas around and on my hips or showlders hurt, its mostly on certain spots with radiating pain, sometimes its an
achy body thing or numish sensation on my leg or hands if I pull weeds or do gardening work. which is very upsetting because I miss me. I keep praying and
asking God for strength and the right attitude and to be blessed with the right people. Actually I can see this thing started back about 6 yrs ago but it
wasn't until last Sept. that it just started going like this. I had something really heavy fall on my head b ack rt before anything ever happened in
terms of ocassional pain. Well, the thing is that I really think my doctor is right and also by what I've read on it. Somebody mentioned on the replies
that it might be a nerve being pinched, its the same thing my husband thinks and I guess it makes sense especially my neck took such a blow from what hit my
head back then.....that's when this numish thing started but just that lately its lasting more and the funny thing is that it makes a very small part of my
tounge feel kind of numish too. Does anyone know if the tongue ( muscle or nerve in) can be affected by a neck or spinal injury??????????????? thank you in
advance for this is really bothering me. I am still going to follow up further on this with my doctor ---- good thing my MRI is fine, so they're not
seeing anything abnormal with it, but for now knowing this would calm me down a little I think. Sorry this turned out to be another long entry. Thank
you again, I will check for any replies later after I have my 7 year old go to bed.
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Shirley |
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Angel in the Clouds
Posts: 35658 (05/30/08 04:57) Clouds Administrator
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Hi again.
This is a picture of where the tender points of Fibro are located. Maybe this will help you better understand some of the pain you are having if you do have Fibro.
You mentioned; "sometimes it feels like the areas around and on my hips or shoulders hurt," People with Fibro have a tender point just below the hip joint and also along the shoulder.
Last Edited By: Shirley
07/13/08 09:09.
Edited 1 times.
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 Frogfur43 |
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Ray of Sunshine
Posts: 1547 (06/01/08 05:03) Ray of Sunshine |
Hi, Hope and I'm sad and glad to see you here. Glad to see you found us, but sad to see you need us. I'm one of the guys that are stuck with this
horrible mess. Yeah, we get it too, usually not as many of us as you ladies, but when we do we usually get it as bad or nearly so. How do you tell who hurts
the worst?
My fog is just that. Fog. My whole day kind of dims out. It's like walking through thick fog. I really don't remember much about the times when the fog slips in. I'm retired Navy and used to dealing with fog so it's nothing new. Just getting used to it internally is a bit different. My main pain areas are my hips, back, shoulders and legs. But I've eased the pains in a lot of ways and get along pretty good now. I've learned to take life easy. I'm old. I'm allowed. I don't have to work hard any more. Life just drives me crazy because I want to work hard a little now and then. You learn to get used to it. 
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PaulaAngel |
Hampster Memory | |||
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Posts: 6 (07/02/08 02:26) Founder-Creator
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Add a few concussions to that.. (had 4 last year from falls) ... result ---------> Hamster Memory!!!! Yeah you read that right.. Hamster.
(smiles and laughs because there is no other way to handle this mess). |
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PaulaAngel |
Hey.. WTG Shirley | |||
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Posts: 7 (07/02/08 02:30) Founder-Creator
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Way to go Shirley on those graphics!!! I couldn't have said that any better either.
I really did like your input and the graphics to help the people still figuring this out. |
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itty b |
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Ray of Sunshine
Posts: 2124 (07/02/08 09:41) Ray of Sunshine |
Hi Hope,
It is so good to see you here with us...and I hope you stick around and join our family. We need a Hope among us! Your description of Fibro Fog doesn't match mine. I don't have any physical symptoms with the Fog...it simply makes it hard to focus, hard to think, and when I have it bad enough, I can't get any words out. I can be thinking of what I want to say, but for some reason the words will not fall out of my mouth. It is as if my brain has gone on strike. I get confused, and find I have to breathe deeply... and try to relax.... Doesn't generally help with the fog but it eases the frstration I feel because I am not functioning properly. I do have to wonder about something else though. Have you tried going to a chiropractor? If your neck/spine is out of alignment, it can certainly pinch nerves and cause some of the symptoms you are experiencing. A chiroprator will do exrays of your spine and be able to determine if this might be a part of the cause. Please stay with us, keep us posted, and share often... Many hugs coming your way, Luvs, itty  ~Life is not always what we make it...sometimes it's better~ |
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Wind in the Clouds
Posts: 49 (07/03/08 12:45) |
Welcome Hope,
Sorry we are meeting under these circumstances. I hope all goes well with your doc appt. I hope they can diagnose you properly. It took me many years to be diagnosed & boy I really suffered. My fog is sometimes I cannot concentrate, a little blurred vision if I am reading & I can't remember if I did something a second ago & have to always double check myself because I don't trust my crummy memory! I hope they can address your issues & you are well taken care of. I have seen doctors of all sorts. I am currently seeing a Pain Mgmt. Doctor who is taking wonderful care of me. My husband is in Medicine. Don't hesitate to come to me with any questions. He is always more than happy to help out others. your new friend, Dawn
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bcgrote |
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Wind in the Clouds
Posts: 56 (07/06/08 06:58) New to Clouds |
I dunno about a rheumy, I went to a Neuro dr. Fibro fog? I, um, can't remember... At least I used to be able to laugh and use the great Simpsons line
"THing... for.. digging.. food!" Isn't aphasia wonderful! Add to it hubby's hard of hearing, and our conversations range from weird ot
annoying! Oh, and see that? Typing dyslexia! Do I have the energy to go back and fix it? Depends...
Everyone has unique fibro symptoms, but there are enough similarities to show that we all have this same thing. I also get horrible torn and shredded cuticles, to the point that they bleed. I carry a lot of bandaids for that. I also wonder about my skin, which seems to over-grow. I get ingrown hairs, a flaky scalp, weird bumps. Some days it hurts too much to wear clothes! Other days I felt ok, almost normal, but was petrified because if I overdo my activity, I would be bedridden for anywhere froma day to a month. The Staranyl books are excellent sources of information, and this forum is indispensable, not only for info, but for support from people who REALLY understand. A pal of mine sent me a great poem, the gist of which was to have a productive day, because at the end of it, your going to be tired even if you do nothing. Great sentiment for unaffected people, but when you wake up tired and run down and in pain, it can make you a leetle beet angree! (she's one of those 'shake it off' kinda people. I try to cut her some slack, but it makes me mad.) And if you don't have pain in one or even all of those spots, it's still ok. Those pain spots were based on criteria from a rather small study from well over 15 years ago. They found a majority of people with fibro had pains in several or even all of these 14 spots, but that was all the study was. But for some reason, others grabbed onto it to say this was the major diagnostic criteria for the disease, instead of just definite markers. I saw another website that pointed out these spots were where major arteries in the body split, and that it was actually the lymph systems that was affected by blockages at the split! Any way, you will come to know your own fibro, and will hopefully find what helps YOU. THere are now a lot of medications to TRY, not all will work on YOU, and that is OK! Keep trying. Don't let any 'doctor' try to convince you that you are not feeling pain or exhaustion. They aren't inside your body. You are the one who must fight for your treatment! Try it all, you may be surprised and pleased at what works! |
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Slim348 |
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Angel in the Clouds
Posts: 13488 (07/07/08 03:04) C.J.
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Hi Hope and welcome to one of the most supportive groups you will ever meet. Sorry you had to find us due to FM but glad you did. I would have the doctor
check for nerve damage because of some of your symptoms.
My Fibro Fog is most the time like the others. Had an incident one day that really shocked me. I had stopped at a stop sign that I knew was there but sat in the car and was waiting for 'the light to change' until someone honked at me. Other times I will forget completely what I walk into another room to get, not be able to think of someone's name, just stop in the middle of the floor and ask myself, "What was I doing?" I have so many other medical problems that sometime mimick FM that I am not sure which is causing the problem. Shirley posted some great charts and others have given good info. Thoughts and prayers that you will be able to find out just what the problem is and the doctor's can help. also hope you will continue posting here at Clouds. I have been here 6 years and was recently on vacation. I really miss all the love and support of this wonderful "family". (As you can tell, I get long winded too)
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JoyW1955 |
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New to Clouds
Posts: 1 (07/11/08 07:24) |
I thought I was going crazy with the rt eye problems and face numbness. I went to a neurologist and he put me on 50 mg of Amitriptylin at night so I can sleep because if I dont sleep these symptoms seem worse. He also said my migraines could cause these type of sensations. I also have had cat scans and mri and they are all normal, my neurologist gave me an EEG that showed pretty normal funtion. I also have sleep apnea and my oxygen levels go way down at night so I am on a c-pap machine with Oxygen. YOUR NOT ALONE and thank God neither am I.. This SSI/SSD process is something all the hoops they have you go thru... Take care I pray for all here for peace and rest. Joy 
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kaycee |
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Angel in the Clouds
Posts: 5666 (07/12/08 12:30) Angel in the Clouds |
Hi Joy
I wanted to say welcome to Clouds. Hope you will join us and feel free to ask questions or add your input. I also have migraines and sometimes I will get one without head pain, but have my left side of my face go numb and have the ocular aura, in which I see weird rainbow squiggles in my vision. When that happens, it generally only lasts about 30 min. Unfortunately, when I DO get the headache type migraine, it can last for days. 
I have been to a rheumatologist (when my PCP apparently did not know what else to do and sent me there  ) and all she did was confirm the diagnosis and say that she did not treat it,
that I would have to see my PCP for that.
Prayers that you will find a caring doctor who can help you. It is good that your tests so far have not shown any sign of stroke or anything, but it can be very frustrating when all the tests are "normal". But that is generally how FMS is diagnosed.....by ruling out other stuff. Many of us here have experienced the "brain freeze" thing. This is such a weird disorder. When these things happen to you for the first few times, it is downright scary. Once you know that others have experienced the same type of things, it takes a little bit of the scare factor away, but with all the crazy symptoms this illness seems capable of producing, one is never sure if it is "just the Fibro" or something else. Hope this helps a little and hope to see you around.
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Shirley |
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Angel in the Clouds
Posts: 35784 (07/13/08 09:07) Clouds Administrator
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JoyW1955 |
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New to Clouds
Posts: 3 (07/14/08 12:37) |
Thanks Shirley!
I have been to so many doctors and the rhumatologist confirmed fibro, the neurologist stated I probably will never work a full time job ever again and maybe never work again... I in the process of SSI/SSD the SSI has benn approved thank God!!! I however have to go to a psychiatrist for a Mental exam for the SSD office... I pray everyday for God's grace and peace... this outlet just keeps me praying more for others and then I dont have such a pity party here at home and I can share exactly how I feel and people just understand, that is the true blessing is being validated in all of this.. Thank you again for the welcome and many blessings... Joy
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Cindyl57 |
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Angel in the Clouds
Posts: 5361 (07/14/08 09:08) Angel in the Clouds |
Welcome Joyce...I am glad that you have found us...I also am glad to hear that you got a dx...I think that it validates that we are not crazy..that there
really is something wrong...
And when you come here and see that we have been where you are now, it makes you feel not so alone..I know that if I say my hair hurts today..you will know...I really mean my hair hurts today...lol..chances are..yours does too...Hope not... I not just a looney... Hugs Cindy |
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