NEw here and have some questions

Hi everyone

I am going to the Dr tomorrow and was wondering what I should be asking her.

A little history

Im 52, over weight and mom to 3 boys 15-27. I am also just starting menapause.

I have been now well for a while, 3 years ago, I was having tummy trouble, Dr, said IBS

Ok But it only got worse, so thru research and then confronting my Dr. then tests, I have celiac. OK dealing with that. I have been ok on the diet, can do better with it.

ok around begining of June of last year, I really started to feel bad, it came on so grad. I really didnt notice it too much.

I have other issues that makes me in pain offen, so I am used to pain.

But when I did I got scared, Memory loss and confusion - thats was scary, the pain, was bad and tylenal and advil didnt even touch it. The pain would and still does come out lf no where and hurts and then leaves, or it overstays it's welcome. Then I cannot sit, stand or lay down without being in pain.

The tingling and werid feelings in my legs at night. I can go on,

but I wont bore you. This summer was a hot one and I cant afford to run the air. So with the heat, lack of sleep,the pain, I was really depressed this summer.

I ate to feed my depression, and I gained weight.

I couldnt go anywhere, because I was weak and feeling strange,

The only reason I went to my regular Dr. was I have cough that needed treatment. I mentioned to the Dr, my problems.

He said it is most likely fibro and i should go to a rhumatoid dr.

I went and she said, she thinks I have it and other things, she took blood and  gave me a muscle relaxer to help me sleep.

It did help me sleep and it is giving me night mares now.

6 weeks later I go for the tests and she said it appears to be just fibro, she ruled out thyroid and other stuff.

She gave me cybaltha and the same muscle relaxer

and I took it for a week and i was in more pain and now my mouth was so dry it was leaving sores and I was constipated and I felt like my insides was twisting from it, SO now I am on the muscle relaxer and tomorrow I go see the dr.

I am still in alot of pain, I can wake up feeling good, and a hour later im done for, and in pain.

SO my question is

what should I be asking the DR tomorrow?

Is this Lyrica worth trying, the side affects sound scary.

Is this something I will have to get use to now, this kind of pain?

Thank you for reading this

i am so at a loss

sandi

 

Dear Sandi: I am so sorry to hear about all your troubles. Sometimes it feels like it is a crime to be sick and to be poor. A person suffering as you are should have help so you can have your air on when you need it. Can someone help? The church, salvation army, some kind of energy subsidy for disabled people. I am a bit confused about your meds. Could you clarify. For example, is the cymbalta making your mouth so dry, or perhaps the ambien, and is the ambien contributing to the nightmares, or perhaps the muscle relaxer. The problem with muscle relaxers is they slow down the peristaltic spasms in the bowel and result in constipation. I eat Activia yogurt every day, and because of that, my bowels are much more efficient. However, if you have celiac, is milk products forbidden? If so perhaps you could drop by a health food store and ask about the probiotics in Activia. It might be available in another source. First, let's look at what we know. You have been diagnosed with IBS. IBS is very common with Fibromyalgia. The pain you experience is not there when you first wake up, most unusual for Fibromites, we usually wake up in bad shape, stiff, achy, feeling like we slept on the cold hard ground. It takes many of us 1, or 2 hours to be able to move about. Your situation is different in this regard.

You speak of memory loss, confusion and weird tingling in legs. Fibromites frequently experience memory loss and confusion, we fondly refer to it as Fibro Fog. Many if not all of us suffer from that. The weird tingling in your legs at night, could it be restless leg syndrome? It sounds like that, however, I experience it only when I use the antihistamine, benadryl, or when I am in withdrawl from some meds such as Tramadol (Ultram). No one should have to suffer through that level of pain. I also might reccomend a daily exercise routine, like walking, begin slowly, a few hundred feet, increasing it by a bit each day until you can walk a mile or so without collasping. It would be great if one of your older (at home) children, accompanied you for the first few days in case you have a weak spell.

Now the menopause. Oh Boy, that can be causing some of your symptoms. Obviously intolerance to heat, but also, because it's hormonal, it could be triggering problems with other hormone systems like the Adrenal Glands, the Thalmus, the Thyroid, and so on. We mammals are complicated physiologically. I had to use a gel that you rub on your belly or thighs once a day to get through menopause, it contained estrogen and helped level things out. Also, there are some soya products that have natural estrogen, or even Red Clover leaf, which is supposed to help with menopausal symptoms.

Many of us have to write our difficulties down on paper to take with us to see the doc. For example, restless legs, fibro pain, ambien-nightmares, menopausal symptom relief. Many Fibromites also have meds to get them through the really hard days. Some kind of pain med, some kind of muscle relaxer. If you have difficulty paying for medicine, let the doctor know. There are some very inexpensive meds for fibro that have been tried and true for decades. I much prefer them, just my opinion, because I know what side effects to anticipate. You ask about Lyrica, I cannot help you there, I use an older anti-depressant which has some anesthetic effect in smaller doses, and works for the neurological aspects of my Fibro pain. I also have a codeine and tylenol medicine which helps with the really sore joints and the strain of the longer muscles of the arms and legs, as well as "frozen shoulder, (like a hard golfball size knot on shoulder, just where it attaches to the collar bone. I would love to get a massage but unfortunately, like your air, it isn't in the budget. If you have a health care plan, maybe your doc could prescribe massage, sometimes that's an option. Good luck, keep your chin up. You are uniquely you, it's your body, you know it better than anyone else possibly could. Go for what you need just as you would if you were asking for help for your children. Your children need a mother who is present for them, and when mom's unhappy, everybody is unhappy. 

thanks for answering my questions
I have a list but I feel I dont have it all down, and wanted to know if there are other things I should look into.

this will be my 3rd apointment with her, and it is just to see how the meds are working. But they are not and now I want to get more serious here.

I am worried about the weight gain, as I need to lose weight to begin with
and I gained alot more this summer


IS there a another meds I can ask for?

No I dont meet any places that offer help. I own this house, this is where I grew up and mom left it to me and my sister.
I am living on widows pension


I am on now cyclobenzaprine 10 mg
(muscle relaxer)
and she put me on cymbalta and i took it for one week,
i didnt feel any difference (but I know it takes longer to work)
but it consipated me so bad that the pain was with me for days. So I stopped

I do have pain when I wake up, but its gets worse during the day, I seem to ignore the little pain, as I have lived with it for a long time


i agree i need to move, but i guess i am in a rut.

thank you all again for answering me

Hi wishingyoujoy and Welcome-

I too have to write things down when I see the Dr. or I will forget. Let her know everything you have told us. 

I started menopause early at age 40- perimenopause at 38. I battled 30 to 40 hotflashes a day for 4 years and it finally wore me down. I started on HRT as the benefits out weighed the risks at that point. (I tried over the counter estrogens, etc., etc., and nothing helped) Some women breeze right through it but I was not one of those fortunate ones. I now am on the lowest dose of estrogen they can prescribe for the last year and I hope to be off of that this winter or next winter. It is a personal choice on how to manage menopause but you and your Dr. will get it figured out. Same with the fibro. It sounds like the pain is not under control and make sure to let your Dr. know that also.

We all know what you are going through in one way or another and this group is the best for support-  let us know how your appt. went.

GamJill

Hi There and Welcome,

I have a lot of experience with letti8ng the doc know what is going on with you. Hopefully, your rhuemy is one that listens to you. Remember that you are going in for a medication update. So, you will want to tell her how the Cymbalta made you feel, the side effects you had from it and if you are taking any other meds right now. Unfortunately, everyone reacts to meds differently and there is no 1 combo that seems to help. You are unique, and so your pain regimen will differ. Allow your doctor to try different medications. Give it the ole college try, at least 2 weeks to work.

Most doctors will ask how you are feeling. This is where most patients fail. Be as specific as possible and don't offer any explanations as to what it could be. Let the doctor do that. If they have your history down correctly, then they already know about your celiac, menopause and the whole shebang. Be prepared with a list of any new symptoms or really bothersome ones.
I don't mean to sound blunt, but I have learned that when you give the doc lists of symptoms, or carry on for more then 5 minutes, they tune out. What I have found to be really helpful is ask your new doctor when you should call. Ask the question, if I am experiencing a bad reaction or in a lot of pain should I call you? This way you both are aware of the role that each will play in your treatment.
Alot of rhuemys will refer you to a pain doc and that seems to help many people communicate better.

I wish you all the best, and pray for your pain to let up soon.
Kathy

RIght now I am so frustrated I cant think and I need time to think,
After waiting 3 hours to see the Dr, she comes prancing in and wants to know how things went, SO I told her and she was like ok bye,
I said I had a period first one in 6 months, and she said you have to go see a gyn. But sometimes you just get a discharge (for 7 days??)

So i said i have qurstions, so I asked her am I dx with fibro?
She was hemming and said she wasnt sure, I said ??? You put me on the meds, its been 3 months and Your not sure??
I said i read somewhere that fibro is a result of a condition, she said yes, primary and secondary
I am secondary, so I said ok what is causing my fibro
she said osteoarthritis
HUH I never heard of this before, i know she spends time looking at my hands
she goes what did your xrays say???
I said i never got xrays she said oh
so now i have to get xrays of hands knees and spine

i said why do you think i have this?
She said your knees crackle,
well i am double joined and my knees have been out more then me lol


so I asked her about the pain i am in
and how it changes and mirgrates and stuff
she said that the muscle relaxer she gave me helps me get into the deeper sleep, and there for my body gets air into it and relaxes, but I said ok but i have been on this pill for 3 months and I am still in pain, and sometimes its worse
she didnt say anything about that
i am so frustrated and confused

Yes, I agree with Sherrine, Wishing, you need a new doctor. I do too so don't feel bad lol I am actually on the search for a new one.

Oh, and it is nice to meet you, welcome... I am Jenna and I was dx'd with Fibro this past December.

You'll love it here

________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

hi wishing,

i am going to chime in also with "you need to find another doctor"!! it certainly doesn't sound like the one you have now is taking you very seriously at all.

also-welcome to the forum!!! not happy you struggle with fibro, but i am happy you've found us:)

There is no doctor I'm going to sit and wait three hours to see. Sandi, sadly there are a lot of doctors out there like the one you seen. If you went back today the woman probably wouldn't even know your name.

 

There are good docs out there. I didn't like my rheumy so I fired him and found another one that treats fibro and MPS and he never seems rushed no matter how many questions I have for him. When you call a doc's office ask to speak with the nurse and ask if the doc believes in fibro and treats it. It puts them on the spot and you may hear silence for a few seconds cause they aren't use to people asking point blank questions but it's your body and money. You will be able to tell the first visit whether your going to click with a doc. I found the rheumy I wanted to see and then asked my GP for a referal to see him.

 

I know how frustrating this is but don't give up hope and we are always here to help you.

 

I have osteo arthritis in my hands, lower back and neck and yes fibro intensifies the pain from it but the arthritis is not the cause of fibro.

 

luv and hugs

Marlee

Wishing,

I know that you mentioned you were diagnosed with Celiac. I do not have Celiac, but am Gluten Sensitive. I have really started reading labels and paying attention to what I put in my body and have noticed that it has had a GREAT impact on how much better I feel. Not to mention that in your case, if you don't follow your "diet" you could potentially be hurting yourself even more. I was also diagnosed with IBS, but those symptoms have decreased since paying special attention to the gluten free diet.

Also, after I learned I had Fibro, I immediately eliminated all (as much as possible) chemicals that I put in my body. This too has helped tremendously. I no longer drink carbonated beverages, coffee, alcohol, caffienated drinks and have given up fake sugar. I no longer consume aspartame or any other variations of that and can't believe the difference. I know this sounds like a lot, but trust me, you will feel better. I have also noticed that I am extremely sensitive to medicines (more chemicals) so the only thing that has worked for me is Trazadone. I take a really small dose at night, right before bed, and it helps me reach the deep sleep I need to help heal the muscles and make me not feel so bad the next day. Sleep has been the biggest challenge since being diagnosed, but when I take my medicine and plan for a good night (about 8 hours), I can really tell the next day.

I really think that any form of exercise will help a lot. I am a big fan of yoga/pilates because of how gentle it is. I rarely hurt (in a fibro way) the next day. Also, any walking that you can do would be good for more than just your fibro. Yesterday, I went to my first belly dancing class and it was fun and I was able to not over exert myself and so I feel good today.

Oh, and just like others have said, try and find a Rheumatologist. My first appointment was 2 hours long and I was confirmed as Positive for Fibro in that first appointment. I had a list of EVERY symptom/pain for 9-10 days straight and he could tell from that and the 18 tender point test. I was amazed. Also, we are figuring out what meds work each time I visit, but we do one at a time. I have never upped a dosage or started something new at the same time as another change. This has helped us to trouble shoot exactly the culprit of the "side affect." I have tried Cymbalta, but it made me super tired. I didn't take it long enough to notice if it gave me digestion problems.

I hope this helps. This is the first time I have posted back, but the Celiac caught my attention.

Aimee