Confused by Symptoms

General
1

I have been suffering for a couple years now, and was diagnosed with Fibromyalgia about 1 year ago. I have been on Lyrica since then, and it has worked. I was unemployed for the winter, and started feeling great! (with the occasional flare) I cam back to work about 1 month ago, and work a full 40 hours, if not a bit more. My aches and pains have slowly been getting worse again. While I was unemployed, I exercised mid morning, and it definitely helped my get through the day. Now that I am working again, I can't work out until late afternoon, after my aches have kicked in, and I find it very hard to be motivated and actually work out then. Here is my confusion... The past couple days have been getting progressively worse. In addition to the aches, I have had confusion, forgetfulness, difficulty finding words to express myself (or even hold a conversation), and sometimes I even forget how to do a simple action. I found myself staring at a cup of water for a good minute, because I couldn't seem to understand what to do-pick it up, why pick it up, what is is for... Sometimes these moments pass quickly, sometimes they stick around for quite a while. It is scary when it happens, because I recognize something isn't right, but I don't know what or why. I know FM and MS are very similar with symptoms. I have never been tested for MS, and now I don't have insurance (or the money for testing). Are these symptoms typical for FM, or should I be more concerned with something else going on? Is this something I should just chalk up as more FM symptoms and hope it passes?

Thank you for your help!!

Jennifer

2

Hi Jennifer, I'm so sorry to hear that you are suffering. I have never tried Lyrica so I'm not sure how the side effects are but you may want to see if your symptoms are tied to that. I have issues with memory, forgetfullness, problems remebering words or what I walked in to a room for. I'm also dizzy all the time. I've been tested for MS and was negative. I would definitely try to see your doctor if you can. Any chance you can get on government insurance?

3

Thank you. I have been on Lyrica for long enough now, that I don't think the symptoms are related to that (even though dizziness and vertigo are common side effects). Wow, even as I type this I forget what I was typing! lol I was on government insurance, lost my job (and income) and all of a sudden I am being told my household makes too much money to be on assistance. Makes sense, right? Lose income, lose insurance. Oh well. I do qualify for a sliding scale with a local clinic and hospital, so I know if it gets bad enough I can go there. I just know they have not provided even mediocre care at the clinic, in the past, so it scares me to think about going there. It could be the stress of all this, that is causing my symptoms to get worse. I saw my dr the week before losing insurance, which was also the week before going back to work. He was concerned with how I would feel after returning to work. I am scheduled to follow up with him in 4 months, and I plan on paying cash for that appointment, if I have to. I am just not sure what to do about further testing...

4

hi..i hope you can find some way to get some medical care. as for me i know that FM, MS, CFIDS(cfs/me) and lupus and some other stuff have very similar symptoms and that all are not always easy to diagnose. it is good to have a doctor following you to take all the needed tests.. i send you much love

suzie

5

Hi Jennifer,

Though I do not have an MS diagnosis, I have had 3 brain MRIs looking for lesions that could be from MS or SLE. Luckily they have all been clear. Fibro is so much like autoimmune, and so many autoimmune disease symptoms are so very similar. Many of these including Fibro are known as the 'great imitator'.

http://en.wikipedia.org/wiki/The_great_imitator

My Rheumatologist explains the 'fogginess', lack of concentration, retention, and memory problems in general as simply "the result of chronic pain, and lack of proper sleep due to chronic pain", however, it is not the answer to everything, and this should be mentioned to your Doctor.

Welcome to the group, there are so many great people here, and so much good information shared!

Glad to have you with us,

SK

6

Lovett, I am hoping this is just a flare up due to going back to work. I have been back for three weeks, and we haven’t gotten busy yet. We are very seasonal, and April and May will be extremely busy, and thus, stressful. I am concerned that this may not be a flare, but an ongoing/progressively worse situation, as long as I am still working.

7

I was very loopy when I took Lyrica. I took it for about four months and became more confused every day. Even low doses left me very confused. If it is not caused by Lyrica, it is probably fibro fog. It is very difficult to function in either case. Have you been doing too much? It’s very important to pace yourself with fibro. Fibro can mimic lots of conditions. Have you had your thyroid checked?

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Hi Jennifer, I am so sorry for what you are going through. I am new to this site and have been amazed that the things I’ve been through and go through, are written by so many others. About 2 years ago my Fibro was worse than ever in the 10+ years I’ve been diagnosed. I do have other diagnosis now but not then. I am a nurse but am not working right now. The last 2 years were part time but I couldn’t stay focused enough to do what was expected of me in 8 hours. I have times of stress when I lose things, forgetting where I put them. I cannot hide something away and remember in 2 days or less where I put it. I now make lists of where I put something or tell my husband. I was a nurse manager for 12-14 years. All managers met in conference room for report on what was happening in our units with patients, staffing etc…, I became unable to find the right words. Couldn’t finish a sentence and became so slow at my work that I would clock out and work into the night to finish. Things just progressively got worse and really didn’t improve until I went out on short term dissability and now trying to apply for permanent. Your symptoms are FM and not MS. Our bodies are maxed out on stress and we cannot deal with more than the day to day normal stress. You may not be able to handle the stress of work. MS is more muscle related than nerve related. Soft and gentle love and hug so you as well as prayers. I will be checking on you!

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Jennifer,
Stress can add to our foggy head. I too go through this. But I would definitely see a doctor… I do notice that when my stress goes up or if I’m tired or if I’m in a flare or about to flare this stuff you talk about gets worse. I’m forgetful, can’t figure the right words to say which is really bad during my lectures… I’m a instructor. Forgetful. Forgetful. Did I say forgetful. I write notes. Set alarms and use my calendar at work on my phone and my desk at home. I so worry about missing that important thing. And even with all the alarms set and posts it’s everywhere I still tend to forget something. Anyways, talk to a doctor to be sure. But I think you have reached what most of us call the fibro fog :frowning:
Hang in there

Hugs

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This is how I feel! I was reading your reply, and almost thought I wrote it! lol I feel like crying for so many reasons. I am in pain, and all forgetful, and can't focus, etc... I have always been the "leader", and in control, and now I can't even control my own body. I have prided myself on some of the things I can do, even simple things-like type fast and accurate. Now I have to slow WAY down and really think about the words, the letters, where my fingers go on the keyboard, and the order of it all. I am afraid this isn't just a flare up and it is going to stay, or get worse. I can't afford to not work, so that stresses me more, and makes everything worse! This week has been especially bad. I wake up each day thinking maybe I feel a bit better, but within an hour it is worse, and then the day becomes worse than the previous. (Did that even make any sense?) My husband is a self-proclaimed "superman" who works through pain and injuries, so he doesn't understand how I feel, and he gets frustrated at times when I forget stuff, or am not "taking control" of certain situations. I don't like taking too much medicine (pain killers) because I don't want it to become habit forming, but I find myself taking Tylenol 3 almost every day now, sometimes only once a day, but sometimes a couple times. That scares me.

So frustrating! Can't afford to not work, but can't physically operate while working! I want to be there for my family, and small children. I want to be able to do things with them, and have fun. But, I feel like I can't do it now, and when I force myself to move through the pain and confusion so we can do the "fun" things, then I pay for it later.

I think my biggest stress, right now, is I don't have insurance. I can't afford insurance, and some how, with our messed up system in this state/county, we no longer qualify for state/public assistance. (long story, many hours on the phone) I get my Lyrica for free through a program from Pfizer, but I have to pay for doctor visits (way more than I can afford), and definitely can't afford testing. Even if I get insurance, the deductible would have to be paid before they would pay anything, which means I would be paying for all of this out of pocket, anyways. So why even have the insurance!

I know there is no easy answer, and I know some of this is a waiting game. I just don't have a lot of patience when it comes to things like this, and, in all honesty, I just don't know what to do anymore. Thank you for letting me vent, and sorry for the rambling.

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Wow. That’s a lot for anyone to take all at once, and a lot to worry about. I hear you, and it seems that you have an almost overwhelming amount of stress and worry going on. It sounds like it may be making your severe case of brain fog worse. Do you think that could that be happening, because, if you do, then I have some suggestions that may help. I don’t get brain fog, just have pain, but I do get stressed and overwhelmed. Sometimes that alone can be almost debilitating, because it makes my symptoms flare like crazy. This is what I do: I make a list of what I am concerned about, then I review it while trying to be very objective. I pick out what is most important and decide to leave the rest for another day or another week. I make a plan to address every concern on the new list, and tackle one thing at a time. I vow to not worry about the items that didn’t make it to the short list until I have completed the short list. When I am done, I go back to the big list, pick more things and get going again. This may sound very elementary, but it has been so helpful to me and helped me reduce my stress induced flares, so I thought it might help you.



As far as your doctor visits, I was wondering if it is a larger practice? Some of the larger practices have very good nurse practitioners or physician’s assistants, and a visit to one of them is roughly half the cost of seeing one of the doctors. Also, if you speak to the practice manager beforehand and explain your situation, you may be able to work out some sort of payment arrangements or they may decide to charge you less for your visit since you will be paying cash. A lot of offices do both of those things, one just needs to ask. I lost my coverage from October until January 1 last year, and this is what I did in order to see practitioners with my usual GP’s office. They really worked with me, and I had at least one visit a month. They usually charged around 50-75 which I didn’t think was to terrible, considering.



I really hope that things get better for you, and I am so sorry that you are having such a miserable time. If you need anything, don’t hesitate to ask.

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I literally just wrote a post about the fibro fog. I understand exactly what your going through. I used to think it was some sort of panic attack ,cause not being able to think does actually scare me so I get anxious, then i realized i was not being able to think and THEN becoming anxious not the other way around. I ended up on a high dose of klonipin because of it but now I know its just fibro fog and that gives me some comfort to know im not loosing my mind or dieing or something along those lines.

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Well after 1.5 mg of klonipin I felt calmer and wasn’t worried and the fog would lessen eventually. I still take the klonipin when I get a lot if anxiety but I don’t take it 3 times a day anymore.