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Posted 3/8/2018 2:18 PM (GMT 0)
The REAL cause of all your pain is something else, but the docs just aren't looking deep enough? I've had fibromyalgia for at least 30 years. Considering the pains in my childhood, I'm thinking I was born with it. I did have an abusive childhood, so maybe that triggered it (as some theories suggest). I also have pretty bad osteoarthritis, and I've heard that can feel quite systemic). Anyhow.....in November, I woke up one morning with incredibly worse joint and muscle pain, and constant tingling in the legs....along with spasms, jabs, tingling in other areas. It seems to just be getting worse and worse. I also feel sick a lot. I just can't feel well.....even on some days that aren't so horrible.

My Internist wanted me to try gabapentin, slowly......since I'm so acutely sensitive to just about everything. I'm on 200mg and on Friday, it will go up to 300. I've had absolutely no change from it, except to have a lot of small headaches.

I've had all the usual tests run......all normal (Chemistry, CBC, inflammatory markers, a few muscle labs, a lumbar spine MRI). All normal for the most part.

I have an appointment with a supposedly really good neuro doc, but have a 2 month wait.

Do you ever feel like you're slowly dying? ......like something terrible is wrong and nobody is trying to help? I like my Internal med doc, but I feel he always treats all my symptoms as Fibro. He's never referred me to any other doc, so I have done that myself........but nobody seems to dig very far.

Do you ever feel like you're slipping through the cracks constantly, and nobody is helping?
Yes, I have to take responsibility for not wanting to try a lot of SSRIs and other meds (Plaquinil), because they usually give me side-effects that I just can't tolerate.

Maybe all this pain has depressed me and made everything worse.
My husband is an M.D.......and he's, unfortunately, the same as other docs.........he has given up even trying to figure this out, which is very sad to me. .....since if he had this, I would work hard to find some solutions/treatments, etc.

I just needed to whine. sad
But I do feel like I might not live long, and that makes me very sad.
Posted 3/8/2018 4:20 PM (GMT 0)
So sorry you're having such a hard time. I think it's good to see other Dr.s and rule out other issues. You'll either get answers one way or the other but either way you'll have done all you can and have taken control of your disease.

Have you read the 101 at the beginning of the board? I've had fibro for years and was still surprised by what some of it said.

But, yes I've wondered as well. I started out with fibro, it turned into MS because I had several lesions on my brain, the went back to fibro because I didn't get lesions any where else. They can't tell me what has caused to lesions so... I also have a nasty sleep disorder and blame a lot on sleep deprivation.

I wish you much luck in your journey.
Posted 3/8/2018 4:49 PM (GMT 0)
Thank you Lendi! I suppose life is made worse by me, by having a problem forcing myself to go to docs. I've been disappointed so often, and sent on so many wild goose chases. I'm also convinced I have some type of learning disability, since reading very much is almost impossible for me. I could be a lot more informed if I could read more.

My husband can order various MRIs, but I'd rather have the doctor I'm seeing order them, since they might know more about what exactly to order. But I would feel better with a brain MRI. Hopefully the neuro doc will order one. I think it's crazy to start the whole process of diagnosing with a medication, without checking out other areas of the body. I've always felt that Fibro was a very mild form of M.S......but who knows.

Maybe I always had a milder form of Fibro, and now it's progressed. (Although it's always said it's not a progressive disease). I'm 68 and I'm sure I'm also just wearing out. But it seems like there are a lot of older people who aren't in constant pain. I want to be one of them, but I guess we don't always have a choice!

about your sleep disorder Lendi.......do you have sleep apnea? I've been using a cpap for about 11 years, and it definitely helped with some things.

thanks again!
Posted 3/8/2018 4:57 PM (GMT 0)
Cathy, you are not dying. I think you are quite depressed. When my husband died suddenly I was so incredibly depressed that I went to bed every night asking God to take me because I didn’t want to be here anymore! Does that sound like the Sherrine you have seen here for 13 years? Nope it doesn’t! I’m a positive thinker but that is exactly what depression can do to a person. So don’t worry about dying.

Look. I’m not a doctor but it sounds like you have excellent doctors PLUS your husband is a doctor! All of these professionals are in agreement...that you are having all the pain because of fibromyalgia. You are in denial and that is causing all of the stress and depression which, in turn, increases your pain! Start listening to your doctor and try new things. Obviously what you are doing for your pain isn’t working.

A key reason I believe it’s fibro that you are dealing with is because you have had all these diagnostic tests and your inflammatory markers tests were normal. No inflammation! Fibro isn’t an inflammatory illness according to the medical field. Most anything else that would cause all of this pain IS inflammatory and it would show in your blood work.

I’m sure you’ve seen me talk about the abject misery I was in six years ago. I almost couldn’t walk. My superb Internist tried everything to help with the pain and, yes, my blood work showed inflammation. So he sent me to a rheumatologist because he was out of ideas. The rheumatologist ran blood work and my inflammatory markers were off the charts! Between that and an extensive family history that he took, I was diagnosed with ankylosing spondylitis and sacroiliitis...along with fibro. These tests were all done because my inflammatory markers were high. Apparently you do not show inflammation...hence the diagnosis of fibro. To ease your mind, ask if they will check your inflammatory markers one more time. Your Internist can do that. If it still shows no inflammation, then you need to accept this illness. You are driving yourself crazy with all the doubts.

I don’t take anything that isn’t helping me. If you are not getting pain relief from gabapentin but are getting headaches, let your doctor know. There are other medications similar that could work much better for you. You might ask about a muscle relaxer. That has really helped me. I take Robaxin (methacarbamol).

They are thinking fibro is a neurological problem so I’m glad you will be seeing a neurologist. They may be able to help you too. But it is imperative that you try to change your attitude about what is happening to you. Life sure isn’t fair but you can overcome a lot of negativism with positive thinking. First, read the link in Fibro 101 on how to maintain a positive attitude when you have chronic pain. Next, start believing the doctors. They are there to help you and they do know more than you about all the medical issues. Get up in the morning looking forward to a new day and set small, doable goals for yourself each day. Keep as active as possible. Movement really does help with the pain of fibro plus you will have more energy too.

If you haven’t already, start taking vitamin D3. I take 5,500 IU’s daily...counting my supplement, D in my calcium supplements, and the D in my multiple vitamin. Magnesium malate has shown to help some with fibro and a lot of people are deficient in magnesium which will cause more pain. I take krill oil, potassium, and also COQ10 to help with pain and muscle cramping. I’m helping myself by doing all of the above. I wish there was one magic pill that would take care of the pain and weird symptoms but there isn’t. But by my doing all these things to help myself, I have a good quality of life. I enjoy and love life and I plan on living many more years!

So, instead of constantly thinking about pain and illness, start zeroing in on all of your many blessings and all the things you CAN do. Catch yourself when starting to think negatively. It can be a game. Every negative has a positive if you look for it. Focus on something other than your health. You will be happier and have less pain. If you live up in the snowy north, you might think about getting a light box. These help with depression which also will help lessen pain. You can use this when watching a great movie, working on the computer, etc. Use it every day and you should feel better.

I do hope you take this post to heart. It sure looks like you have been thoroughly checked out and even your husband doesn’t know what else to say. I’m sure he loves you very much and wants to see you start enjoying your life. (Having your husband still with you is a huge positive!). It’s time to accept this illness and listen to your doctors. They really are trying to help you. Feel better!

Sherrine
Posted 3/8/2018 8:39 PM (GMT 0)
Cathy, I read your post & wanted to respond. I am not a dr by any means but it sounds like depression has you in its grips pretty solid. I see you do not want to take medication, have you considered seeing a psychologist for talk therapy? Back in 2002 my health did a complete 360 & I became disabled. I know exactly what depression feels like & can do to a person. My dr referred me to a psychologist who was wonderful. I was also put on medication. With her help I learned how to look at my health problems in a different way. I stopped letting my health control me. Oh yes, I have many days I feel really bad, but I remind myself there are many people out there much worse off than I am. I no longer worry about the things I can no longer do, instead I concentrate on the things I can still do. I had to retrain my way of thinking & how I looked at things. I learned there is a true connection between the mind & body. I did not always think this way believe me.

It sort of sounds like you do not believe Fibro is your correct diagnosis. From what you posted you have been checked out & had quite a bit of testing to rule out other issues. One thing I will tell you about MS, there is not one single test to diagnose MS. It is a process of elimination of other conditions & ruling out many things in between. People can have lesions show up on the MRI's but that does not mean they have MS. There are different type of lesions & most are benign. Regardless, there is treatment & medication used to treat with.

I doubt you will get relief with Gabapentin at your current dose. Knowing how it works I am not surprised at all that it is not working. At the dose you are taking most likely it will not be effective. It is a medication that the dose has to be titrated over a little time to get to a therapeutic level.

I hope you get to feeling better.
Posted 3/10/2018 1:27 AM (GMT 0)
Thanks Sherrine and straydog.

Yes, I'm sort of depressed, but having been REALLY depressed earlier in my life, this just doesn't feel like that. I was handling my fibro until November, when it suddenly changed drastically. Maybe it's my work in medicine that has made me aware of other possibilities. And yes......I do respond poorly to physical symptoms. I have been considering therapy, but have had several fairly useless therapists, so I'm dragging my feet a bit on that.

Yes, my husband is an M.D., but he doesn't handle treating family members very well. Sometimes he seems to give others more diagnostic attention than he does me.

Even before November, with all my problems, I was pretty active.....big garden, water gardens, planting lots of trees, bushes, etc. But now I've become fairly incapacitated with even just going grocery shopping. So that's why I'm trying some doctors with different specialties. Unfortunately, I couldn't get in to the neuro doc for 2 months (now it's 1 month), but I'm very anxious to get his opinion.

I'm going up slowly on the gabapentin. Tonight I increase it to 300mg, which is probably a decent starting dose.......but my doctor said it's best to take it slow. So I'm hoping to see some decrease in my constant leg buzzing on this dose, or a little higher. I'm so very sensitive to meds, I'm surprised I haven't felt anything yet. Well, I have gotten headaches, but no change in anything else.

I AM trying to continue to be productive and find pleasure where I can. It's hard to overlook constant pain though. I guess we sometimes define ourselves by what we do.........and I can't do a lot of that anymore....without having so much pain.

I will consider everything you both have said and appreciate your input!
Posted 3/10/2018 2:43 AM (GMT 0)
I get where you're coming from, I think. I was diagnosed with fibro, but I've never really felt secure in that diagnosis because I feel like there wasn't enough testing done. My doctor is really slow to prescribe anything (because I haven't reacted well to medications) and it takes a long time to get referrals here. My son has a lot of similarities to me, and it takes so long for doctors to take me seriously about him. It's so tiring to have to take care of myself let alone advocate for my son. And then on top of that, I feel like I have to push push push for care for both of us and then to feel like I need to do my own research to try to figure out what's going on in my body - it's just so tiring. We finally seem to have a good ped for him and I've got a lead on a neuro that sounds promising, so I'm feeling a little hopeful.
Posted 3/10/2018 4:53 PM (GMT 0)
Hi schoobymummy..........just curious what your son's symptoms are. My son is in his late 20's now, but when he was young, he had some similar symptoms as I did. He doesn't seem to have as many now, but he's defiintely aware of all the sensations in his body, and occasionally calls to talk about them. My daughter is a little older and she's very healthy, but seems to have a very hyper neuro system, so I'm hoping that doesn't cause her problems. The last thing we want for our children, is to suffer like we do.

I'm sorry about your son, and hope that you can find some good help for him (and for you too!).
Posted 3/10/2018 6:08 PM (GMT 0)
He has daily chronic headache, a lot of shoulder and neck pain, as well as occasional full body pain and fatigue. He's had issues since he was a baby but, of course, I couldn't get anyone to believe me (well, mom, all babies cry.... Well, mom, all babies tantrum...). So frustrating. We're both highly reactive to weather - any change at all sets off muscle pain and headaches.

It is hard to see them struggle and not to be able to help them.
Posted 3/11/2018 12:18 AM (GMT 0)
Good luck with the new neuro scoobymummy. Yes, it is really, really hard when we can't help our children feel better. I'm sort of in disbelief how reactive I've become to weather! It's really hard to believe it can be such a powerful factor. My son had what seemed to be abdominal migraines. He also seemed to pass out easily.........but fortunately, he outgrew most of his problems. Hopefully your son will too.......or you'll be able to somehow treat the problems he's having now. One of my neighbor's sons had a lot of problems and I think she found out it was a severe food allergy. Maybe your son has something like celiac disease. Sometimes we can have bad effects just from a food intolerance. Good luck! They are so precious to us.
Posted 3/11/2018 8:47 PM (GMT 0)
Totally with you guys on the weathers impact..our weather has been crazy on the east coast, and it has taken me in and out of flares..some knock me on my butt.others i can push through.l

Any one i know with fibro always thinks, if we could just get 5 days in a row that are sunny, we would feel better.. the rollercoaster weather is wearing on us.l

0ne thing i kniw for sure, if my vitamin d gets low , all my symptoms are much worse.

Lj
Posted 3/12/2018 12:18 PM (GMT 0)
It's always a nice surprise when you get any doctor who has had personal experience with fibromyalgia. They just understand.

I had an ortho doc once who, I believe, had a wife with fibro. But...about weather affecting the body....he shared that he had had open heart surgery. After he had healed, he was out playing golf when I storm was coming through. He had a lot of chest pain, and thought he was having another heart attack. As soon as the storm passed, all his pain went away.

I think everyone's nervous systems react to weather, but those of us with fibro have more sensitive systems. I was also wondering what it must do to us, going in and out of our homes, businesses, etc., from air conditioning or heat, into the opposite weather outside. I noticed my dog's fur gets confused if it's supposed to grow thick or shed, when she goes outside in really hot weather, then comes inside to pretty cool air-conditioned temps. It must be very confusing for all beings' systems, to go back and forth all the time.
And yes, this crazy up and down weather must wreak havoc on our systems. I would love to have some consistency! (especially the sunny kind!) smile

I hope this isn't the new normal for weather. That would be sad.
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