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Need opinions on medical issues/fibromyalgia
4 Replies
nanllyn - February 24

I'm a 44 year old female and happily married to a very supportive husband. I have struggled with health problems for the last 10+ years. I had a total hysterectomy when I was 31 and that caused a lot of problems with hormones as I could not absorb the synthetic hormones but natural didn't seem to help either.Even with the health problems I will list below, I still worked full time up until I was laid off 3 weeks ago.
I have had problems with stomach pains and had to have my gallbladder out about 9 years ago. But that helped but I still kept having stomach pains and just aching pains in the stomach and groin area. This went on for years before I was finally diagnosed. Approximately 4 years ago I was diagnosed with Interstitial Cystitis. I have good days and bad days but it seems like the bad days are getting to be more and more. The only comfort I have is in a lying position (with a pillow under my knees) or a reclining position. Laying straight, sitting straight up or standing (seems like it "stretches" my abdomen area and causes pain) is hard on me for more than 15 min of standing or 30-40 min of sitting upright. So it is getting harder and harder to sit at a desk. My last scope of my bladder showed that my bladder lining is bleeding mildly, which they say is normal with this condition's progression. I do have UTI's but I am blessed to say they aren't extremely frequently and most people battling this condition have UTI's pretty frequently. I have sharp shooting pains a lot of days but not every single day but every day I do have a general soreness in the pelvic and abdomen area.
Well after complaining for 10+ years about my memory problems, hard to get started in the mornings, aches and pains all the time, a feeling like I can never get enough sleep, blurry vision that comes and goes throughout the day, still having stomach pains and nausea and just a general feeling of not being well. They finally did a sleep study and found that I have 16 "seizure like" jerks a minute. They didn't call them seizures just seizure like jerking. It showed that out of 8 hours of trying to sleep I fell asleep for 6 1/2 hours, with a total of 45 minutes of REM sleep. So basically, I was only getting 45 minutes of sleep a night. So they thought that was my memory problems and sleepiness. They put me on a few sleeping pills but they all raise my blood pressure too high so I can't take them. They finally put me on Klonapin which helps me to sleep at night but I'm still tired just not as tired as I was. It is hard for me to sit still for more than 1/2 hour to hour max before I'm falling asleep. I can not sit and watch tv or read a book because I'm bobbing my head trying to stay awake but just can't. I don't drive myself anywhere that takes longer than 15-20 minutes as I may start fighting sleep. Another thing that really bothers me is that my memory is getting worse and worse.
Then I was diagnosed about 2 years ago with firbromyalgia and chronic fatigue syndrome. I'm on Lyrica to help with the generalized aches and pains (it helps some) and Ultram.
My fear is with the progression I have seen in the last 12 to 18 months with my memory has been pretty rapid and just how much more will I lose. Someone can tell me something and if I don't do it immediately (or write it down) then I forget a lot of times. I forget people's names I've known for 20 years. I can be talking and say the word dog in a sentence when I mean cat (just as an example). I can be in the middle of a conversation and just forget what I was talking about. Sometimes I remember after a few minutes of wracking my brain sometimes I don't remember at all or maybe days later I remember what I wanted to say. Or the worse is knowing what I want to say but can't think of the word I want to use. With people I'm close to, who understand my condition, I can try to get them to think of the word for me. I will say, i.e. She is a (pretty) person. Pretty being the word I can't think of so I say to the person I'm talking with, "the word I'm trying to think of is someone that is nice looking or the word means beautiful". Because I can't for the life of me think of the word "pretty". Then after maybe a couple minutes or so sometimes it comes to me if someone doesn't say the word from my descriptions. And that is another thing. I promise I'm an honest person, yet sometimes I can start to tell a story about something that happened and then in the middle or end of the story I realize that doesn't make sense and couldn't be the way something happened. And then the real facts come to me and I say no that's not it. This is what really happened. If you don't know me you would think I was making these stories up as I change the facts because I remembered them wrong when I first starting telling the story. I don't blame people who don't know me to think I make them up because of this. It is an awful feeling to realize how stupid I sound sometimes. I'm not dumb (maybe not the swiftest! LOL! but definitely not dumb). I love trivia and love to play but I can't think of words a lot of times and it drives me nuts because I know the answer. My husband of course gives me time to think of the answer. Sometimes I can come up with the word and sometimes I give up after a few minutes because I just know I'm not going to think of it, even though I know I know it. I forget to pick things up at the store or to do a certain errand. Yes, I make lists but you have to remember to pick the list up before you leave!! My memory is just horrible and the thing that worries me the most is how much worse can it get. I've even lost a lot of my common sense. I really have.
So I know I'm forgetting to tell you more things but this is a lot for people to read any way. I have two questions basically. 1) Is this normal with fibromyalgia (the generalized pain and the memory problems)? 2) Do you think with all of this that I would be approved for disability? I know no one can say for certain but with what I have said do you think I have a good chance of being approved? I know it takes months if not a few years to get approved. It would be very hard financially but I just don't know how much longer I can work with the pain, blurry vision, memory problems and sleepiness. It just is too much most days.
Thanks for listening. And thanks for your input. It's really hard to decide as I'm so young but just not sure what else to do.


kvc33 - February 24

While it's normal to have some memory problems with fibro, yours seems extreme to me. What does your doctor say about it? Have you been tested for early-onset alzheimers disease? What have they said about the nighttime jerking? Are you familiar with Periodic Limb Movement Disorder? Lots of people with fibro have that or Restless Leg Syndrome. All I can tell you is that for 16 years I had to take medication to get me to sleep at night and my sleep cycle was delayed; now that I am on an allergen-free diet, those problems are disappearing. It's worth getting tested for food allergies. If you are in the US, Allsup is the company to contact regarding helping you with a disability claim.


mdak - February 24

nallyn- I to suffer from severe memory problems. I just got done taking a neurological test. It was not good. I did score very low. I am 45 and a nurse. The dr's were kind of shock. I decided to try to help myself with reading and other things to enhance my mind. Yes my husband has taken over most of the household things, bills especially. I cant drive due to my memory problems. I suffer from FM for many years. The dr's are not sure if it is FM or dementia. It was hard to hear that becasue you dont know what the future holds. I did get on disability, took 9 months. I didn't need a lawyer, but it took 2 times. I was lucky to have long term disability in place from my old job. They pay me still while getting social security.If you do go back to work, see if they have long term disability benefit. It sounds like you have numerious medical problmes like I did. I am so glad I payed a few extra dollars to receive it. Make sure your dr's are on the same page you are with disability. Some dr.s have a hard time with it. Do your homework on the disability, it's a long and hard road, but it's worth it. My health has improved, but I still have bad days even being off.


January - February 25

nanllyn - PLease do not waste time. This is serious. I am concerned that the drugs might be causing your problems. Please do not let a doctor dismiss your concerns! He may not know all the side effects.

I agree you need to talk with your doctor about your problems. But first, get some information to take in with you! If you aren't thinking clearly, could your husband do some SERIOUS checking up on the side effects and interactions of ALL the meds you are taking. Make a list of everything, including over the counter! Take it to a good pharmacist (not a clerk) at a good pharmacy that is not part of a large discount store. Ask to speak to the PHARMACIST, NOT a clerk, and explain you need serious help with drug side effects. When you have this information, take it to your doctor and tell him your problems, asap. Doctors SHOULD know all the side effects for the meds they prescribe, but sadly, they don't have time. It's up to you to complain LOUDLY. has good information, but even they do not list every side effect. A pharmacist has access to a database and can look up the most current medical information. My pharmacist once printed out 30 pages of information on one drug for me!

I googled Ultram, and one of the side effects is COGNITIVE DYSFUNCTION - this is mentioned under the "Side Effects for Professionals" - meaning they assume consumers are too dumb to understand, and this is for doctors. (LOL! Like any of them have time.) What you are describing IS cognitive dysfunction! also states Ultram also should not be used if you have a seizure disorder. You state that you are not having seizures but something "like seizures." Definitely follow up on that. There are many types of seizures, and some are not obvious. Sometimes a small seizure causes you to just stare blankly for a few moments, or to get the wrong words, as you are describing. Here's what drugs. com says:
"Seizures have occurred in some people taking Ultram. Talk with your doctor about your seizure risk, which may be higher if you have:

a history of drug or alcohol addiction;
a history of head injury;
a metabolic disorder; or
if you are also taking an antidepressant, muscle relaxer, narcotic, antipsychotic, or medicine for nausea and vomiting."

I also checked Lyrica, and here are the "SEVERE" side effects which I copied from I put some into capital letters so you will notice the ones that relate to your post. Maybe you are having more symptoms that you didn't write about! Some people do fine on Lyrica. Some people do NOT do well! I wonder if this is the cause of your problems getting worse in the last year and a half - I assume they gave you Lyrica when you were diagnosed with Fibro!


medical attention right away if any of these SEVERE side effects occur when using Lyrica:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue, unusual hoarseness); burning, numbness, or tingling of the hands, feet, or skin; chest pain; CONFUSION; fast or irregular heartbeat; fever, chills, or persistent sore throat; inability to control urination; loss of coordination; MEMORY LOSS; muscle aches, pain, tenderness, or weakness (especially if this occurs with a fever or general feeling or discomfort); new or unusual skin sores; NEW OR WORSENING MENTAL OR MOOD CHANGES (eg, anxiety, depression, restlessness, irritability, panic attacks, feeling "high," behavior changes, suicidal thoughts or attempts); NEW OR WORSENING SEIZURES; reddened, blistered, swollen, or peeling skin; shortness of breath or wheezing; SPEAKING PROBLEMS; sudden, unexplained weight gain; swelling of the hands, feet, or ankles; tremor; trouble sleeping; trouble walking; unusual bruising or bleeding; UNUSUAL TIREDNESS OR WEAKNESS; VISION CHANGES.

THIS IS NOT A COMPLETE LIST OF ALL SIDE EFFECTS that may occur. If you have questions about side effects, contact your health care provider."

Good luck, don't wait around. You could be having a very bad reaction.

The good news for all of us is that now we know the brain is always changing and growing - so we can heal ourselves a lot with a healthy lifestyle!

mdak - you make perfect sense when you post on here! Glad you are feeling better! Keep going!


SerenityNow - February 28

I've had some of the same memory problems you've described. Forgetting the one word I need, losing my train of thought in the middle of a sentence, having to make lists, forgetting to do things, etc. I have also found that I am forgetting how to spell (and I've always been the "good speller" lol).

I found your explanation with the word "pretty" remarkable. My explanation goes like this...for the word "coffee", to explain my memory problems. It's hot, you drink it, you put cream and sugar in it, you grind up the beans. Starbucks sells it, for goodness sakes! It's almost like playing charades.

If someone asks me to do something for them (my niece asks me to pick her up from school) they know they have to remind me...the morning of, the afternoon of, and 10 minutes before I have to leave. It's like being an irresponsible child sometimes. If I get busy doing something (petting the dog, lol) I'll forget sometimes.

I always, always, always feel like I'm forgetting something. I've learned to do a check before I leave home. I check for my purse, keys, phone, any papers I need. Usually I have to turn around. I know where all the closest turn around are near my home. I wonder what the neighbors think?

We just came back home after being at BF's camp for the weekend, 200 miles away. We drove separately. I was the last to leave, so it was up to me to shut everything off (BAD idea, lol). BF just had to call someone to go up to camp and make sure the coffee pot is shut off...and I did a run-through of everything I was supposed to shut off before I left. At least I didn't forget the dog.

Personally, I tend to blame my memory problems on the meds. It doesn't mean I'm right, it just means that what I think. Write down the things you go through daily and talk to your doc about it. Maybe if some of your meds were adjusted it would help. I really believe that some of the meds I take cause more problems at higher doses. When I have them at lower doses I don't have as many problems. Sometimes it just takes my body getting used to a new med.

I also often have what I call "sensory overload" very easily. I can't stand the TV being on if I'm talking or reading. The TV can be at normal volume for others, but seems too loud to me (and that's odd because I don't hear very well). Bright lights bother me. Moving/flashing/flickering things (lights, images, fan blades moving, etc) really bother my eyes. Basically trying to do more than one thing at a time is too much sometimes. I've been diagnosed with Meniere's Disease (a problem in the ears that also effects the eyes) and the docs blame it on that...but I often wonder if I really have Meniere's at all.

So, in any case, just know that you're not alone. I know that doesn't really make it any better or easier to deal with. I try to laugh at myself because I just don't know what else to do...when I find my TV remote in the fridge and I take my cordless phone to the grocery store. I have been like this, off and on (it seems to come and go sometimes...another reason I think it's med related) for about 7 years, as long as I've had FM. This has not gotten any worse for me, that I am aware of, I would say it has stayed the same. Although it does get worse when I am under stress.

I would think that lack of sleep alone would cause this type of thing also.



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