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New and in need of support and coping strategies


#1

Hi there everyone. I am 57 and the mother of 2 adult children. I have been married nearly 40 years to the same wonderful guy. I have three beautiful grandchildren who are the light of my life. A 13 year old granddaughter, that lives with me, a 4 year old granddaughter and a 4 month old grandson.

I have not “technically” been diagnosed with Fibro at the point. My doctor will not commit to that “yet”. She eludes to it at every visit and has ruled out several other causes of my multiple symptoms.

I work full time as an Outreach Librarian, try to be active in my church, spend time with my family and keep up with being a wife. Most days I feel as if I fail at all of it. I am constantly tired, have pain in places I did not know I could have pain…:slight_smile: seem more forgetful, struggle to stay awake at work, have no motivation, and have mood swings from …well you know where. The pain is so bad some days that I don’t want to move, but I force myself to stay as active as possible. I am on Gavepentin 3 times a day along with Zoloft.

I just feel alone. I feel like nobody understands and I hate letting my family down. I want to have the energy and stamina that I used to have.

Thanks for listening


#2

Hey Mimiof3,
I do not have fibro, but have a brain injury. I have had multiple surgeries to ‘fix’ things, the ‘fix’ hasn’t worked. My pcp has put me through a battery of tests to eliminate every possible other thing it could be. In his defence the surgeon sent him a report saying ‘All fixed’ but he could see this is not fixed, the symptoms I had the surgery for may have been relieved ut the surgery itself has resulted in further damage. Because the pcp didn’t want to be seen as blaming the surgery,the elimination process needed to occur, which was frustrating at the time but in hindsight a very good idea. I say a good idea because now when a dr suggests a treatment I can say “Already tried that… …and that too…” I have found that once certain specialist see that every other option has been exhausted they can be a bit more accepting of a final diagnosis. Also by proving negative for test a,b, and c that only leaves result d. More a process of elimination than a test of positive ( if that makes sense.) I’ve found that “process of elimination” can also be the case with medications with the hope of finding something that works. Having multiple symptoms can be a little confusing for some specialists as they can be solely focused on their speciality but not see the whole picture.
Sounds to me like your pcp is being thorough and that’s a good thing in the long run, I can assure you.

Merl from the Moderator Support Team


#3

Fibromyalgia is diagnosed by eliminating other things, so sounds like your dr is taking good steps…

Have your vitamin d levels been checked?

I managed a long time with fibro, but when my vit d levels dropped , i was really in trouble…i have to take a lot esp over the winter months and can back off when i get back into the sunshine…

Ask any question you have , between ways your dr can help and self help techniques , you can feel better…we have to pace ourselves at times tho…cause our bodies can really push back when we over do…

To me stretching and heat often help, acupressure, helps and some supplements…

Write when you need to and we can check in…lj


#4

I think you are doing a great job of coping. You are here, reaching out and that is a big step.

Regarding diagnosis: Also consider chronic fatigue syndrome, with all of the tiredness and falling asleep, it may be a joint diagnosis of fibro and CFS. They are both “syndromes” because they are a grouping of symptoms without a known cause or effective treatment.

Regarding coping: If all of the activities you do are wearing you down, it may be time to take a step back at one of them. I went on leave when I was first diagnosed (age 29), but at soon to be 33, it was my best decision. I had to change to a job less physically demanding. I had to sit down with all my family and explain to them the disease, how I feel every day and how I am coping. I had to tell them that asking me how I am feeling every day will not make me feel any better.

Most important thing is you have to reaffirm to yourself that you are NOT a failure. You are struggling with an illness. You are doing the best you can. Try to have a positive outlook and it can make a difference. I always remind myself to count my blessings. It gets me through the tough times.

Gentle hugs. Hang in there.

Heather


#5

Dear Mimiof3,

Sounds like you are managing and doing so much, with your grandkids, work, marriage and church. I’m pretty new to this forum also, and also have not yet been technically diagnosed (have appointment next month at Stanford for that), am also tired all the time like you.

I would like to offer you encouragement, and I hope that like me, reading the encouraging posts here will offer you hope for feeling better in the near future. I think Meow has a good point about considering (and perhaps floating past your doctor) the possibility of chronic fatigue syndrome in addition to a Fibromyalgia diagnosis (I need to consider that possibility to come to think of it, so thanks, Heather!). On the other hand, I read recently in a Fibromyalgia literature review, that something like 60 percent of people with Fibromyalgia also suffer from sleep disturbance as well as chronic fatigue symptoms. So I think the syndrome of Fibromyalgia includes the possibility of chronic fatigue symptoms, without your having to have a separate “Chronic fatigue syndrome” diagnosis (hope that makes sense).

There are so many possibilities for you to try, when you read this forum! On my end, I can recommend CBD oil for pain and sleep if your State has legal medical and/or recreational cannibis, tylenol for pain, lyrica for pain, cymbalta for pain and depression, light pool exercise (especially in a therapeutically warm pool) for pain and depression and increased energy, opiates for when the pain is really bad. Others have had success with other meds or modalities. How is your sleep? My psychiatrist thinks all the fatigue effects of fibromyalgia have to do with poor sleep. I’m not sure that is true for me, but I know my sleep is crappy. Oh, I should say I think melatonin at night is a bit helpful in that regard, hard to say.

One more thing, if you get real desperate like me, regarding the extreme lack of energy, I am now trying long acting adderall also for that and my hard to treat depression, which my psychiatrist is prescribing. I have finally conceded that it helps my depression and gives me more energy (mostly helps me with mental energy but even some physical energy). I have to be careful with that drug as too much and it interferes even more with my sleep. Anyway, I’ll try anything at this point. Fortunately, if you are open to trying new things and medications like I am, there is a lot out there for you to try! So there is a lot of hope.

I know you will feel less alone in reading this forum! I wish you all the best and welcome to this forum!


#6

Dear Mimiof3, I am 65 with 2 grown daughters. Pacing yourself is a necessary technique which I fought at first. But it really helps so cut back on some of your activities and forgive yourself for needing to do so and for needing extra rest. Be prepared for loved ones who just won’t get it. I have a psychiatrist and a therapist for mental health issues predating Fibromyalgia but my psychiatrist is good at prescribing sleep aids and meds to help with pain. Currently Cymbalta and Seroquel. My pain specialist has me on 2 different opiates which are making it possible for me to do more and activity is good if not overdone. Be patient with your doctors because different combinations work for different people at different times. Share your list of meds with all doctors so they can see what else you’re on. I found acupuncture to be helpful but expensive. Going to try massage soon. Last but not least, be kind to yourself.


#7

Hello,
I just want to say I’m proud of you for sharing your fear and frustration. I’ve spent over 20 years keeping it to myself too; and just recently joined this support group because I refuse to do that to myself anymore. Having FMS is hard enough… not going to isolate, make excuses or feel like a failure(worst of all for me!!) ANYMORE.
There is a section here with “letters to friends or family” that can be borrowed and shared with yours. Just give them a read… maybe one will speak to you; to how YOU feel. One did for me. And I forwarded it to my family. Not gonna lie it was awkward for me. But necessary. And they were MUCH more understanding and supportive than I’d hoped. Of course we don’t want to be pitied or seen as a broken mess… at least I don’t. Do I still worry at times they do? Sure. But mostly they have an understanding now if I have to cancel plans last minute, or cut short my time with them, etc.
My faith teaches me that we are not to hide our truest selves from our loved ones, but to have faith that they have Gods’ grace and courage to handle not only their fears or worries but mine, too. It IS an act of faith to go to the ones you love, or not hide from them when you’re at your worst.
Not that it’s easy!! Lol, what do I know I’m a mere mortal and stumbling Christian at best!:grimacing:
In any event this space is here for us, and I’m glad you joined. I wish you good health!
N8trluvr


#8

Hello, just believe you’re not alone. I began having symptoms in my 20’s. I finally got a diagnosis of Fibro about 7 years ago. I’m now 65. It was exasperating but I’m glad a lot of others things were ruled out. I was diagnosed with MS for a long time because of double vision, fatigue, brain fog, staggered gait and other things. Finally knowing the real diagnosis actually was a relief. Now I know what I’m really fighting. I think you are a very strong woman!!! Stay strong and peace be with you on your journey :slightly_smiling_face: