New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
So tired of feeling like this
11 Replies
momma2zac - December 7

I went to my dr this am and he took me off the savella, I was having terrible tremors(would last 3-5 hrs after taking) I was gradually going up on my dose and I had terrible headaches and felt my heart would beat out my chest.So he put me on lyrica.I am worried because he said I would prob feel drunkish for the first few weeks.I have small children to care for and a lot of appointments to go to, I have no one to drive me about so what am I suposed to do? I am in terrible pain but Im afraid to ask for anything for pain Im afraid to appear to be a drug seeker.Somedays are better than others and I just dont know what to do.Im not sleeping and I take seroquol at nite so I just feel groggy and like a zombie, when I do finally get to sleep I have terrible dreams that wake me and I cant fall back asleep(last nite dream my teeth were falling out)I wake at 5:30 to get the kids up for school and after they leave I try to go back to sleep if I am succesful it is the best sleep I have all nite but most times I toss and turn and wind up getting frustrated and go ahead and get up.I feel like Im losing my mind.I am unable to concentrate and I have fallen behind on housework.Ive been job searching but Im fearful I wont be able to work under these conditions.I feel so angry that I have to deal with this diease.He has said all my labs are good and I am going to see and ortho surg for my tailbone that cause me a great deal of pain.I need some advice on how to get more help from my dr.He truly believe in this as a diease he treats his sister for it, but I am just so exhausted from everything.Please any help or advice you can give is greatly app.

 

Fantod - December 8

Go to the National Fibromyalgia Association website and find another fibro-friendly doctor in your area. There is nothing wrong with getting a second opinion. Get copies of all your current bloodwork and any other tests that have been run to save time and money.

Typically every medication for FMS will be tried (Lyrica, Savella, Cymbalata) before anyone will even consider narcotics. If your sleep aid is not working, ask to try something else.

You should forget about looking for work until your condition is under better control. You can not handle what you need to do now. Work is out of the question and you don't need the additional stress of looking for a position.

It takes time and a lot of tinkering to find the right combination of medication for each person with FMS. We all know exactly how you feel having been in your shoes ourselves.

Anger at having to deal with this syndrome is very common. Please consider seeing a counseler to help you deal with your feelings. Call your local hospital physician referral service and see if they can recommmend someone who treats people dealing with chronic illness.

Again, I would like to encourage you to consider getting some Curamin to see if this helps with your pain level. You can find it at the health food store. It is a spice that comes in capsules in a highly purifed form. It is VERY effective for pain. I've been using it for breakthrough pain for over a year and it helps a lot.

Do you have family nearby that can help you with housework and the kids? Or, some friends who could take turns so no one feels overextended? You need help with these things. Things will improve once a drug regimen that works for you has been identified. You will probably never be able to keep up with everything like you did in the past. We have all had to learn to adjust our expectations in this regard. You'll get through this but I think your best option is to get a second opinion. Just because a doctor treats a family member for FMS doesn't mean he is up to date on every possible option for treating it. Take care.

 

calikat4 - December 19

I am still really new to all of this, but I just want to tell you that I know what you are going through. Some (or most) days it's just TOO much. Hang in there.

 

MzT - April 13

I am new to this blog however I feel the same as you! I am so tired of feeling like this ~ I am taking Cymbalta 60 mg and Lyrica 150 mg three times a day.... I can say that my pain is better, how ever I feel.... blah... I think that I am experiencing "Fibro Fog" .. The Lyrica was a god send for me! It did not make me feel like i was drunk... It just makes me sleepy... When It gets cold I have flare ups and feel like i have been beat up!
The one thing that got my attention in your comment was the Complaint of your tailbone hurting!
My tail bone extremely hurts ~ I frequently have to repositon the way I sit!
I was wondering if this was the same with you or have you had an accident? Just curious Good luck!

 

amymarie - May 12

hi, I can tell u i know how u feel, I go threw everything but one thing stop taking lyrica the side affects are terrible in long term use is not the best, never took it never will, seroqeul put me in the hospital for two days, if u research it its used as an elephant tranqulizer or given to cancer patients to put them out ..my suggestion is take something to relax u .I take klonopin its a non narcotic no side affects not addicting used for anziety will relax u enough to sleep..for pain advil or a mild pain killer like tramodol ..try hot baths and streching ur muscles specially ur neck..Its a crappy feeling I hate it I wish n pray I will wake up and I will feel noraml and healthy ...hope for the best , and hope i helped a little bit..

 

Miss M - May 23

Also please try to find something that relaxs you. you seem overwhelmed and that can keep you from healing. Reduce the stress, take hot baths heating pads, and muscle relaxers. Try to find some calm within and meditate. I take Tylendol PM extra strength and it really helps me alot. Plus I take Exeffor and that helps as well. Maybe your doctor could try a antidepressant for you and the stress you are under. It seems you are disabled and you need to talk to your doctor or contact the SS Disabilty office nearest you, as soon as U can. Take Care God Bless U!!

 

an_unhappy_hurt - May 24

I have tried ALL of the medications that have been approved by the FDA for the treatment of FMS and I have had horrible reactions to all of them..it starts with my face swelling up and goes from there. I am going to try a holistic approach with Cumin and Cats Claw. I jast need to know if the medications I am on will mix with these alright. I'm on a lot of medication. I am a kidney cancer survivor and have to take prescribed Potassium because my right kidney has not kicked in to help after the nephrectomy. I also have MANY other meidcal issues, but n othing compares to the pain I have with my Fibro. today I am next to tears and I have taken Tizanidine (muscle relaxers for people with brain or spine injuries), tramadol and Norco at different times of the day...nothing has helped. Heat packs, massage...nothing, ugh!! Let me crawl into my dark corner and hide.
unhappy hurt

 

January - May 25

Hi unhappy - so sorry to hear about all the problem you are having. I left you a post on the introduction you wrote, but you didn't answer. I too had a very bad time with "FDA-approved fibro drugs."

You seem to have so much going on medically, I'm sure it is very hard to handle sometimes. I don't know how long ago you took the "FDA" drugs - but sometimes it takes quite a while for them to get out of your system - and they can cause withdrawals that make you feel so depressed and weird. If you have kidney disease, it would make it harder for your body to clear them out too. Hopefully you will feel better as time goes on and you get rid of those drugs. They work for some people, but I've read so many bad reviews about them in the online forums.

Going on a gluten free diet really helped me reduce my pain level. This is just a healthy diet, minus cereal grains and flour made from them. There are a lot of postings here about it - many people find it helpful. I don't think that would interfere with your medical problems - and I researched and found some supplements that helped me too. But considering your medical issues, you should probably run everything by your doctors and be followed closely.

Just a note to reach out to you and send you a cyber-hug. Sorry you are feeling down and in so much pain right now, and I really hope things get better for you soon.

 

an_unhappy_hurt - May 25

Thanks for the cyber hug, I needed that. It's funny, my ortho doc had requested that I go gluten free prior to my knee replacement surgery. I did it for a short while. But it seemed very expensive, also another dr of mine asked why was I on gluten free if I didn't have the DX that would suggest I needed a gluten free diet and that I shouldn't be doing it. I have about 7 specialists within one medical group. It seems the only ones that really pay attention to EVERYTHING that is going on with all of the other doctors is my allergist and my rheumy. All my primary care doc does is send me off to another specialist and he himself is an Internal doc, so he should be able to treat most of my problems. Guess it is easier to deligate.
Thanks for writing.
unhappy hurt

 

January - May 25

Medicine is changing every decade. And I've found the same problem as you with the internists or primary care providers, as they call them now. What's the point? The last one I went to charged nearly $500 for a new patient!! Then handed me 6 referrals and said she didn't write prescriptions! So what do I need her for? There was a lot of other stuff she did wrong - so I am done with her. But it seems this is a scam - the "internists" are just like a central clearing house now - all they do is refer you. I can figure that out myself. Doctors are not like they were 30 years ago. It's just a business now, and you would do well to learn all you can and take care of yourself. Don't automatically believe them, or trust them, especially if they are doing invasive procedures or prescribing drugs with heavy side effects that are new on the market and cost a lot - they get kickbacks for prescribing them sometimes.

As for the gluten free diet - how interesting one dr. would suggest it to you and another tell you not to do it. You can learn about the symptoms (a lot overlap with fibro) and the tests involved (not super reliable) and the diet. Most drs. know very little about celiac disease or gluten allergy and gluten free diets. You can ask questions you know. ASK them why they suggest it, or why they discourage it. Bad nutrition will make you feel so much worse and aggravate a lot of diseases. Gluten free probably is a little more expensive - it's not a 99-cent plastic hamburger on a cardboard bun! LOL! But it is a diet that means you eat healthy food - meat, frut, veggies, rice, corn, tapioca. You can't have cereal grains and flour products - or anything made from them. That means you have to avoid most of the packaged food. It's hard to cook when you have fibro and pain. I don't cook a whole lot, but I think most of us eat way too much anyway. And I do take good vitamin/minerals - your body needs the nutrition - the food supply doesn't give us good vitamins anymore. HOWEVER, considering you have kidney problems, you need to run it all by your doctor. Sounds like your allergist or rheumy might be the best, you said they stay one top of things more.

Could I gently suggest you think about changing your thinking - read our posts on positive thinking in the general discussion area. You sound down - and there are things you can do to help yourself…

Good luck, hang in there. Glad you came back to the board and got our messages for you.

 

judyej - May 26

i'm so sorry you are going through this, i send my huggs, cause i am going through it to. i can take savella or lyrica due to side effects. have your doctor to refer you to a pain speicialist. i was there today and now there are trigger piont injection and cream they can give you too try. i will keep you up to date on whether it works or not. i agree dont look for work. i have been out of work for 3mnths due to my fibromyaglia. it does suck to hurt and be tired all the time. i hope you fined some relief.

 

January - May 27

HI judyej - glad you have found some new things to try. The "usual drugs" were intolerable for me too. Trigger point injections and massage helped a lot! Good luck with that. I take SAM-e and I think it helps with pain, as well as Vit. D3 every day. There are many other things out there, if you look.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question