I have found in the last few years my senses have become increasingly sensitive to all kinds of things, I have always had a problem with strong perfumes and cleaners possibly setting off an asthma attack or triggering a migraine...but in the last 2 years I have found that my eyes have gotten more and more sensitive to lights especially fluorescents like in offices and stores, I have always worn sunglasses for outside and driving but with my eyes having gotten so sensitive I actually have purchased some that are very lightly tinted that I can wear indoors and it blocks the brightness to a comfortable level and heads off a lot of headaches, my hearing has gotten very sensitive...I am so very sensitive to sounds especially the higher pitches....I just have fits due to some noises, I can't stand loud noises it just tenses me up and makes me nervous, jittery and totally out of sorts....I don't like to get out in public at all due to this..
Is anyone else with fibro experiencing(or experienced) anything similar on the vision and hearing sensitivity?
I am just not sure what is going on with that, I go thru the fibro fogs and they seem to be getting closer together and lasting longer also, and during a rough flare up it is difficult for me to function at all, due to skin pain and joint tenderness from fibro and ra, the two get so intertwined its hard to know which one is to blame...I take 2 pain meds,2 ra meds,muscle relaxers,arthritis meds, steroids,antianxiety/depression meds, bcomplex vitamins(to help with energy)multi vitamins,calcium,magnesium, so we have coverage on a lot of fronts trying to work it thru...and we are working on getting me started on savella as soon as it is approved...
Any advice or information or shared experience would be greatly appreciated.
This seems to be common among Fibro patients with our screwed up nervous systems. Smells don't bother me, but now they stay with me for days (if that makes sense-just can't get them out of my nose!). Lights bother me, I now keep the house dark and driving has become a nightmare. Loud sounds I am EXACTLY like you -- that seems to be my worst sensitivity. I jump out of my skin, get anxious and annoyed.... it's horrible. My husband now has to call me on his way home from work, so I know to expect the loud garage door. My aunt always complained of the same thing-she doesn't have Fibro, that we know of-and I never understood how she could get 'angry' over someone dropping something in the grocery store, but now I totally get it.
Are you on any 'nerve' medicine, like Neurontin, Cymbalta, or Lyrica? As much as I despise the Neurontin, I think it's helping with the sensitivities. And a thought: if you are taking an antidepressant already, you might want to ask your doctor about the addition of Savella for Serotonin Syndrome -I ended up suffering for a year from it and was so sick, there were days I thought I was dying. I have taken 'cocktails' of antidepressants in the past, 2 or 3 together, and never had a problem until Savella. I guess it just doesn't like me!
I'd like to know if anyone's neurological sensitivities have been relieved with Neurontin, Cymbalta, or Lyrica--- or any other meds or treatments.
yes I went through this really badly for several years. Fortunately I live on my own so I can cushion myself from others. Nobody really understands unless they have experienced these odd sensations. For me I tried over and over to differentiate whether my problem was chronic fatigue or fibromyalgia. They both seemed to me to be equally disturbing. In the end I decided that the chronic fatigue was worse because it so affected my thinking and my relating to others. Anyway after several years the chronic fatigue diminished. I now suffer from fibromyalgia with a little chronic fatigue that raises its head when I do too much. I hope that helps.Barb
Absolutely Angie, it's all part of it, even if we were never sensitive to any of these things, we are now!
Seems like you are doing everything right on the vitamins, just don't forget calcium citrate for your bones at least 1200 mg! To keep you from the Osteoperosis nightmare! I was just diagnosed with Osteopenia so have been over the vitamins with Rheum and DC.
I have arthritis too, and it's hard to tell which is worse sometimes, that or the fibro, when my arthritis is good, so is the fibro! Be kind to yourself, and stay in touch with us!
I'm so glad you posted! Hope to hear from you more often!
When I was on Lyrica all of that was so much better. The Lyrica also got rid of this electrical like feeling from the back of my neck into my head. Sadly, after 5 months of being on it I started a reaction whereby my legs and feet tripled in size. My doctor took me off of it. I did try it once again at a lower dose and I had the same thing happen with the swelling. Since being off it and just taking Cymbalta my pain is worse, that electricity feeling is back...I'm a nervous wreck with loud noises and well smell is so sensitive! As I've tried Neurontin (Gabapentin) that was a disaster for me and Effexor just isn't effective for me. Not much else to try. I don't know if Savella is available in Canada yet, but I am going to ask my doctor. Sometimes I feel like going off the Cymbalta as I really don't find it does a thing for pain and it's very expensive. I was on a regular anti-depressant before and it worked just fine. I hope some of this helps and if you have anymore questions on these please don't hesitate to write me.
Thanks Renie, I appreciate all the advice and I have a good family practitioner who is working with my greatly...I am unable to take the Neurontin,Cymbalta,Lyrica and Elavil sue to some adverse reactions...swelling severely with the Neurontin and lyrica and the Cymbalta and Elavil run my mind into severe hyper drive as not sleep for 3 to 4 days at a time...so not good...lol...I am taking an antidepressant that is also an antianxiety...we are working on the Savella thru the pharmaceutical company....as I haven't had insurance in almost 2 years we have to do all straight out of pocket...urrrrgh..and the savella is not cheap...so along with my dr costs and my maintenance meds currently we just can't afford it...have applied for social security an am still waiting so it is just a long process...the sensitivities to the sound are the ones I just can't avoid...we have turned our phones down so the ringers do not send me to the moon..my husband even put up some signs on our front door...we had a neighbor that just about drove me bonkers at all times of the day...if I don't answer the phone and it is not an emergency please give me a few minutes to call you back before you try to beat a hole in my door...lol..hubby had to intervene I was about to share a headache...especially if exhaustion has has sent me into a nap..lol...had to set them down and have a long talk with them and explain the best we could that I needed as much quiet as possible...I just do not go out very often for the reason as you mentioned your aunt above so many noises just set me off..I shop at our local small grocery who recently put in a pharmacy and avoid the bigger stores as much as I can..and do a lot of other shopping online to avoid having to get in crowds...so we adjust best we can...but again I really appreciate any and all input and advice...we all have different things that help up make it thru the day a little easier and someone else may benefit from it also..thank you,hugs and best wishes for as comfortable a weekend as possible. Angie
Thank you Barb,appreciate the understanding and input...I have suffered for several years and was able to maintain for quite a few but it is like my battery has drained and won't recharge, used to be could catch a few hours or a few days rest(worked and lived for the school vacations to roll around to recover)and yes I knew it when I over did it..but now like I said it is like a battery that will not charge I stay tired and no matter how much or how well I rest it is just awful....praying for a remission from the fatigue soon...thank you for the information and hope... Angie
Thank you SK, My doctor insists on the calcium, and I am also using magnesium and zinc along with it..we try cover all the areas we can and all info and help is much appreciated..and as you said hard to tell which of the two fibro or ra are the worst...I get at an ugly encompass all the time...I sleep under an electric blanket year round(we live in GA and have to run ac a lot during the hotter months) to keep my muscles warm...if I don't have a little heat on me I can not move and am totally miserable...that little bit of heat helps them to not tense as much...on the worse days I use a heating pad for hands and feet(or my cat...my husband laughs about that our kitten(over a year old now) is mommy tied and loves to sleep on me she actually works well as a heat source on my hips,hands and back...)my hands and feet will freeze when the rest of me is about to sweat so I have to go to another source to adjust...but as you mentioned when one is good they both seem to be good, and I usually do much better during the warmer months..during the winter lots of hot showers and several thin layers to comfortably keep the heat built up on my joints and muscles keep me more comfortable...Thank you for all and I am very grateful for any information and input,as well as the reminders on some of the meds...Hope to hear from you again soon..hugs and wishes for as great a weekend as possible.. Angie