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ibtammi
on 8/28/10 12:04 am
Topic: RE: My dr's all said thry just plain give up
Hang in there hon.  At most stores you can let them know that you need help shopping and they will have one of their employees go around the store with you and put your requested items in a cart.  Or you can call and talk to the manager and explain your problem. If you fax them a detailed list (and maybe pay over the phone with debit card etc)  they can get your groceries ready in advance and waiting for you.  I have Fibro. and lupus that was dormant in April but not so sure now.  I hurt all over so much for a year until I told my husband I just couldn't take it anymore. I finally found a Rhuematologist who would take cash (who knew that would be a challenge!)
and after an exam during which I almost jumped off the table and straddled him as he pushed on pressure points, he gave me medrol injections in my shoulders.  I thought it would hurt but he used an ultrasound and some cold spray and I actually felt no pain.  The next morning I was shouting to my husband when I realized I had gotten out of bed and to the bathroom in just a few seconds and by myself with no pain!  Before I couldn't even  roll over at night without waking up and being in extreme pain and when I finally got settled I would lay there crying because I was so cold and I knew it was going to hurt so much to slowly reach down to pull the covers up. Enough for now.  Don't give up.  We are here for you.  Tammi
figure0156
on 8/27/10 6:12 pm
Topic: RE: My dr's all said thry just plain give up
Anybody have any ideas on how to go to a grocery store? i need to shop and i have a hard time picking stuff up to put in the motorized cart. i do drive but at 22 and in severe pain my vision has also taken such a nose dive i can barely see even squinted. Its a miracle i can drive. i find the grocery store a pain staking daunting cruel punishing task. The store is frigid cold like ice freezer. I can use a motorized cart but as the pain increases the task to finish becomes nearly impossible i am usually balling through the store as i drop things trying to pick them up and have to go back and forth and all around because i am so lost. i don't know anyone who could shop for me. i am the only one with a license. Getting up and down repeatedly from the mobile cart makes it even harder. then loading it all on the convayer belt is hard as well. The things normal people take for granted i find quite hard and not easy to do. Anyone have any advice? Thank you
figure0156
on 8/27/10 6:05 pm
Topic: RE: My dr's all said thry just plain give up
I am in a lot of pain today. I try so hard to be a mom. I fall and drop stuff and still get confused and a lot of real bad migraines. My arms have been going numb a lot lately.
 I am looking into seeing a neurologist but he wants my records and my dr's aren't sending them over. I have a child that wants me to interact with her and i try but i am being stopped by my dr's not helping me in any way at all. They just do nothing. It's not going to go away and i need help. I want to work and go to college. I want to go to a grocery store and i can't do these things. I can't take my child anywhere alone. i wish there was help. i have hope but its so hard. all the therapy in the world isn't going to change my condition. i just want help. some advice, some answers, some hope. I am tired of all of these sedative meds. i don't like how they make my head feel like i have had to much cold medicine but my body bound with pain. i am young and i want to live like a person. i want to feel functional. i hate throbbing pounding pain. i hate feeling different pains and different sensations all over. numbness, sorness, throbbing aching. i have been having cold sweats too. I feel scared actually. How am i going to manage the rest of my life? The therapists office had no clue what to tell me, other then we hope your dr will help you.  *sighs* i hurt and thats all i can say, once again i cry.
Lee M.
on 8/27/10 2:30 pm - sudbury, Canada
Topic: RE: My dr's all said thry just plain give up
When all else fails......smoke a big fat joint! It's not my preferred plan of action, but they leave me no choice...
MainePam
on 8/26/10 10:37 pm - Bucksport, ME
Topic: RE: My dr's all said thry just plain give up
My daughter is 38 but she too suffers the same as you AND they will not give her much to help. I think they are really not knowledgeable (sp) enought to know what to do. I pray that someday they will have more answers....
I do have severe arthritis and the fibro. None of the med's do away with the pain it is always there.
please come here to the site to vent and know that we all understand...

Pam
SlynnD
on 8/24/10 6:10 pm - Pasadena, CA
Topic: RE: My dr's all said thry just plain give up
So sorry you're having such a hard time. I can identify with you in so many ways. I too have severe fibro and one of the symptoms was/is falling and losing my balance and many of the symptoms you describe. I had a difficult time finding a health care team of professionals who understood my level of pain. Now, I'm diagnosed with lupus, fibro, vertigo, and other illnesses. What's helped me with my pain is morphine. It doesn't take the pain away, but takes some of the edge off. My neurologist prescribes it for me. I agree with Hislady that maybe you should consult with a neurologist.

You may have to take a break, but please don't give up. Keep looking for a doctor who will take your level of pain seriously. I've taken all the meds you've listed (and more) and none of them worked for me. Narcotics help, but doesn't take the pain or fatigue away.

Please vent as much as you need to. I believe you and I believe that your pain is real and is severe. You are in my prayers.
    
Hislady
on 8/23/10 12:18 pm - Vancouver, WA
Topic: RE: My dr's all said thry just plain give up
You just vent all you want, I just wish we had more ideas for you. Have you seen a neurologist? The falling doesn't sound so much like fibro, may******ve malfunction which can also cause lots of pain. My only other idea would be see if there is a teaching college anywhere near you that you could get help at. Sometimes they are more advanced in their thinking than regular docs. I would also encourage you to go ahead and do counceling because even if it doesn't help the pain it may help you cope with the whole situation better. I wish there was something more we could do to help, but even so feel free to come and vent anytime you need to.
figure0156
on 8/23/10 8:37 am
Topic: RE: 22 BAD FIBRO and a mommy too HELP
thank you to all for your wonderful answers. i just want to be a mom and go to school but they are forcing me to live a life of pain, confusion, falling, slurring, homebound . It's not fair. I have to take all thse meds giving me a jumble of side effects but no pain relief. Not to mention the 4,000 mgs of tylenol which will crap out my liver one day. I don't know what to do. I am not depressed but frustrated as to why they won't help me. I have done every treatment possible. I struggle for 15 mins at the grocery store before i give up because i can't take the pain. lying in bed doesn't do much either. I can't even be a mother. I wish they believed me. I try all the treatments and i get so dissappointed when they don't help. Like the chiropractor. I was so upset when i didn't see results after awhile. I got upset when the savella made me SO constipated that 3 different laxatives 4x's a day couldn't even produce gas. I had to stop taking it. 
figure0156
on 8/23/10 8:31 am
Topic: My dr's all said thry just plain give up
Hey you guys. Its me again. I am sure you are all sick of my whining by now. I don't know how to fight this thing. I have public aid so dr's are limited to begin with. My age works against me too. Me being only 22.  I have SEVERE FIBROMYALGIA. Here is a list of what i tried and or am currently doing.


1.  Rheumatologist
2. Pain management dr
3. Primary care dr
4. Chiropractor
5.  Savella
6. Cymbalta
7. Neurontin (gabpentin)
8. therapy
9. physical therapy
10. Lyrica
11. Ultram (tramadol)
12. Darvocet
                                    These are things i have tried or am currently trying. All to no avail. I have also been tested for Lupus and Arthritis.  My pain is so bad, i fall, i get lost, i get chronic migraines, my hands get crippled with pain and curl up.  I bathe every 10 days and its excruciating. I can't walk around. I have a child but another relative cares for my child. I do not know what to do. My dr's say there are no other treatments and no other meds and if none of the ones i am on or have been on work then thats it. There is nothing else for pain even something else that is no traditional like an arthritis drug. They all just said they are done, thats the treatment and thats how it is. I am still in so much pain. I do wonder about meds for things like arthritis even though i don't have arthritis because i would be willing to try. But no they just leave me to suffer. Everybody just says no or i don't know. Anybody been through this. I do all that is asked of me and then they come up with something else for me to go do. My last appt i was told to take Lyrica for pain and to go see my therapist for the pain. i fall and i cry. I get frustrated because they think you are a junkie but whoever said i wanted that because i didn't. I told them any medication that will help. I take so much tylenol i feel like my liver is going to crap out. I would try MS or lupus meds to see if thry would help. I am very compliant and i just want to feel better and not stay in chronic pain , cry all day. Sometimes i feel the effects but no pain relief like really sleepy or nauseated or heart plapitations or like a head cold feeling but i will still be in pain. I hate living like this. So many pills to take that aren't even partially helping the problem.  I can't even think anymore or have a basic conversation.
gpatrick37
on 8/20/10 6:12 am
Topic: RE: Living with Fibro and husband
Hi Im Giselle. Hope you are having a good day today. I have fibro and it has been so difficult to deal with up until recently. I finally got sent to a specialist and she put me on a ****tail of medications that have made such a difference for me. They  have linked vitamin d deficiency to fibro so get your vit d level checked. I am on 50,000 untis of vit d a week, 100 mg of tramadol twice a day, 75 mg of lyrica twice a day, and one flexeril 10 mg every night before I go to bed. I went from barely being able to walk half the time to now being able to go back to cleaning my house and cooking every other night. I still get tired easily and hurt if I forget to take my meds, but it has been so great. I have a husband too and he doesnt understand what I feel, but after seeing me cry like a baby so many times, he realized how bad it is. When I have a "bad" day, he cleans and cooks and does the laundry and takes care of everything. He helps me up and down the stairs and just does what he can. He isnt much of a talker which makes it hard for me because I need to communicate with him about it but with getting a response back and I dont get that from him. Of course that is in every part of our marriage. My husband and I are so very different. I would just tell your husband to get online and research the topic He needs to take an interest in your health and how you feel. Just have him read what I am writing to you. It is so important that he be there helping, listening to you if you need to talk about it, and he should know that marriage vows included "in sickness and in health". He is your husband and life partner and without a doubt should want to do whatever he can to get you through the hard days and to totally enjoy the good days. Living with fibro can be so hard and it is very painful. We need all the support we can get. If you want to talk just email me. We can support each other.

Giselle
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