i don't know what to do.....

i go to pm already for my back and neck... i have degeneration and arthiritis in my lower back and he hasn't told me what is wrong with my neckbut he prescribed me muscle relaxers for it... anyway i got really sick about a month ago and my knees and elbows started hurting, i assumed it was just from being sick, but now i am beginning to wonder... i kept waiting for my knees and elbows to quit hurting but it has moved on too my ankles, wrist, fingers, shoulders, and hips.... i don't understand what is happening to me or why.... but it has gotten really bad lately i think the cold is realy affecting it somehow...i will wake up with my elbows throbbing and my hands feel like needles are being jabbed through them... i am really really stiff in the mornin and then it will go away until night or unless i do something like laundry or give my son a bath or xmas shopping was really really bad... my arms and legs felt like they were on fire...i go to my pm doc tomorrow for a epidural in my back and i don't know if i should mention this to himi?? i have a app with my regular doc but he can't get me in until the 6th of jan.... i don't know what to do... i sit in the tub i get it as hot as i can and cry and cry....i feel exhausted all the time, both tired from hurting and just tired...i am on lortab 10/5 and a muscle relaxer already although it dull the pain for a lil bit it does't help long and i hurt and hurt and hurt.... i feel like i'm going crazy and i have no clue what to do... anyones input would be greatly appreciated and i thank you all for taking the time to read thi

[dustybrown]

Hello and Welcome,
I am sorry to hear that you are hurting so bad. I think since you are going to your Pain Management doctor tomorrow, it makes sense to mention that you are in a lot of pain. If I were in as much pain as you say you were in I would ask for some help now. Describe to the doctor what activities that you are having difficulty with like you mentioned here. By doing this you will give him a clear picture that your doctor can understand and quantify your pain. Ask him if he can help you. There is no need for you to sit and suffer for another couple weeks if you can avoid it. Please come back and follow up with us ok. Good luck to you.
-Dusty

[imber]

i'm just afraid of coming off the wrong way because not even my family understand what i'm going through they act like i can't really be hurting as bad as i am.... i'm scared he wont believe me too and i have no clue honestly why anyone would ever lie about something like this.. its not a game.. its not funny its real and its every freakin day of my life.... i don't want him to think i'm asking for more pills... i don't want more of anything i just want to not hurt.. if he could give me a shot for that i would gladly take it.....thank you for replying.... and i will definately say something... i'm just scared

[concerned621]

This time of year and I don't know where you live but my climate is wet and cold. I wake up with severe aches in the areas you describe. I have fibromyalgia.  I also have  disc disease, spinal stenosis, arthritis in my spine.  Do you have any ruptured discs?  I had 3 repaired in my neck, I had horrible pain in my neck, there is nothing quite like neck pain, it affects every thing.  You didn't mention pain medication other than muscle relaxers. I take muscle relaxers occasionally. It sounds like you need something to better manage your pain daily.  Muscle relaxers can be a big help but usually in my experience will not cover arthritis, and disc disease.  Please talk to your doctor about better pain management.  A lot of doctors don't like to prescribe narcotics and if that is the case find a pain management specialist who will work with you and your needs.

Please do not be afraid of your doctor. If he/she give you any reason to feel that way it's not the right doctor.  Suffering in silence especially with chronic pain is awful.  We have such shame and guilt when it comes to our families and physicians.  Trust me it is more stressful and harder on your body to live this way.   I will pray for you and that you get the relief you deserve.  

[imber]

Thank you for the reply... i am taking lortab 10/5 as well... but it doesn't seem to last 4-6 hours that they say it should work and i am up a lot during the night hurting i do not sleep.... the cold does seem to make everything a whole lot worse....i went to my doctor today and he gave me a paper to go over to the hospital and get blood work done, he said if it comes back negative then there is nothing wrong with me?!?!  i know there is something definately wrong and nobody should hurt this way.... he makes me feel guilty as if i am wanting to hurt...  everytime i walk in his office he says well you look healthy....thats bc i put makeup on and do my hair and try to look healthy.... without makeup i am pale as can be with dark dark patches under my eyes from not sleeping.... i just i don't know what to do... or even how to go about getting another doctor... i'm so very tired of hurting and i'm just literally tired.. my body is exhausted from all of this.... my boyfriend and family make me feel horrible all the time like i am just a sissy and need to toughen up.... they just don't get it... living like this is not living at all its just surviving day by day and hoping 2morrow will be a better day than today... i pray all the time that god will give me the strength to just get up in the morning and i pray that this will all get better one day.... it has to right?

[dustybrown]

I am sorry you have to deal with a doctor like that who is so suspicious of you and isn't taking your pain seriously. Have you considered or have you yet seen a Rheumatologist at this point to rule out any inflammatory arthritic conditions or to get a formal Fibromyalgia diagnosis? Rheumatologists are the only doctors at this point who are completely qualified to make the diagnosis (in the US at least) since they are the specialist who created the standards and criteria for doing so. If you haven't seen one, I would strongly suggest doing so. They have knowledge that may be able to help your pain in different and more efficient ways than just PM alone. I would use them together. I get injections from PM and I see my Rheumy. Perhaps a tag team would help?

[concerned621]

If it were me I would take the results of the blood work to a different doctor.  I too go to my doctor with my hair done and makeup on. It's called having dignity.  I get that comment a lot, "but you look so good." I want to scream and say "but I feel like you know what.!!!!!!!!  There are those days I don't do my hair and make up and normally those are the days I don't leave the house. It's hard for family and even those that really love us because they want us to be well. And unless we have something like cancer or noticeable things like a broken bone it's hard for even doctors to believe there can be pain like FM or CFS. I compare it to when my Mother died. My nieces and nephews took it so hard, that they had lost their grandmother. I never knew my grandparents so I really never got it when people would say how upset they were when their grandparents passed away. I'd think well they were old it was expected. It wasn't until I watched up close and personal. It's hard for us to understand something we have not experienced. So try not to take it personally when your family and boyfriend aren't so understanding. Don't take it out on yourself and feel shame or guild because they don't get it.
As for a doctor well that's a different story. Move on my dear. Especially now when you are trying to figure out and get a diagnosis.  Do a search on the internet in your area of either an internist who's speciality is fibroymalgia, CFS, or rheumatology or a family medicine doctor who works with FM patients. Often times a rheumatologist covers FM and CFS. Ask specifically when you call to the make the appointment.  Don't be afraid to ask a lot of questions. Most recently I made an appointment with a new gyn. I specifically asked if this gyn had working experience with FM.  I had read she did. The front office person said she thought she did but was not sure. I pressed further because it was important to me. I avoid invasive procedures because of how bad I can feel after and only a person with strong knowledge of FM will get that.  So I made the appointment but the receptionist called me later that day and was so nice. She said she checked and the gyn was not well versed in FM but there was another one in the office that was so I was switched to that provider.  Just be polite and direct but get your answers.  As frustrating as chronic pain is if you are starting off with a doctor who is already doubting you or not interested in figuring this out with you it will only add to your frustration and cause you more pain.  So move on.
I don't have any experience with Lortab but it sounds like it's doing nothing for you. You need to sleep, if you get at least 6 hours of sleep you will be able to handle these aches better. I think you need a mild sleep pill, I take Trazadone.  One thing I can tell you is dress very warm. Make sure your feet, chest and neck area are covered.  I have learned that if my body is cold in any way I get so ache.   I even wear a scarf around the house and to bed 2 pairs of socks. I keep the heat at 71.  Now for me heating pads and heating blankets make me very achy.  I realized that a few years ago so I really don't use them. So don't over do heat in that way.  But keep yourself warm with layers of clothes.  
Please try to get with a doctor that will take you seriously because I do believe you and I think there could be something going on possibly fibromyalgia.  
And you are right it will get better. My process also was hard, I went through a few doctors some of which made me feel I was the worst person and crazy.  And trust me I wasn't you are not.  Please stay in touch with us and we are praying for you.  

[imber]

I thank you so much just for saying that you believe me..... i about cried just because you said that i feel so nuts sometimes i have noticed that being warm makes a huge difference...i noticed that about a week or so ago when we were out shopping my hands were cold and i said you know my hands don't hurt as much if they are warm... so i too have started layering and wearng gloves and so on... that was a really bad shopping trip by the way... my arms started burning just from carrying to light bags... my legs throbbed and my back and neck.... i am goin to look for another doctor it hurts so bad having someone that is supposed to help you say these things.....i am frightened to take a sleeping pill because i have a 2year old and if something ever happened to him because i wouldn't wake up i would never forgive myself although i agree i do need sleep.... its 4 in the mornin and i have been up over an hour already christmas eve was really bad i was up and down from 11 o'clock on.... 11, 2, didn't get back to sleep til 4 and was up at 6 all because of pain and its horrible not being able to make my family understand..... i just wish they would hug me and tell me it will be alright and just TRY to understand.... but they don't.... they do care... they ask if i'm alright because i was pale as a ghost and i didn't have the energy to do my makeup...somedays i don't have the eneregy to do my hair and makeup and like you said those are the days when i do not go anywhere or do anything.... luckily it was christmas so i just stayed inside and we played cars because that is what my son loves :O)  he is my everything and he keeps me going no matter what.....but you are right it is dignity that makes me do my makeup and hair i WANT to look healthy i WANT to be normal.... and sometimes just for a lil bit i do feel a little bit better about myself knowing that i look a lil bit better than i did before i started....well i am going to take a hot shower and try to go back to sleep i just got on here and wanted to tell you that i really truly appreciate what you say.... its nice to hear from someone else that i'm not nuts.... because sometimes......i really wonder... merry christmas to you.... i hope you had a wonderful day.....

[concerned621]

Well now you are helping me. You are describing my day. I've had shopping trips just like that. My arms and legs burn from the pain. I really do find trying to stay as warm as possible helps. But when you experience that much pain when you are out the only thing you can do is sit, rest and then leave.  Don't drive right away until you feel strong enough so if you drink coffee, have a small coffee and maybe a little something to eat.  Then just go.  It just gets worse when you are in pain like that. And always bring water with you.  That helps so much.
I know what you mean about the sleeping pill. When my kids were small I felt the same way and would not take them. I use to say I hadn't slept in 15 years. If you can have someone come over when you can, you really have to get some rest. You won't be any good to your son if you are so exhausted. Not sleeping is cumulative. You get more and more exhausted and it so affects your health. I was diagnosed with sleep apnea years ago and I even ignored that. I finally gave in and now sleep with a Cpap Machine. They make the masks so small now. I can't stress enough the need for a minimum of 6 hours per night. The other thing you will do (I did) is create anxiety around sleeping. It becomes a stressful thing for you. You said you are frightened to even sleep for fear you won't hear your son.  I understand that thinking completely but you must take care of yourself.
I am sending you a hug and please know that what you are going through is something people with chronic pain experience, you are not alone.  I really think finding a better doctor, try a female for sure and one that works with chronic pain or specifically FM, will help so much.  I also would seek out a counselor who can help you talk to your family. You need their support. If talking to them is hard write them a letter. You really express yourself here so well so put it in writing. Tell them just how you feel.  Again I understand it completely because I am sitting here very pale, I sat all day. I rested most of the day. I have a husband that fortunately will sit with me 24/7.  I don't know what I'd do without him. We use to be so active but with my FM that all stopped.  My kids know when I am like this so they make their time around me and being home.  But it wasn't like that in the beginning, when I was first diagnosed. They would say "when are you going to get over this"  or "when are you going back to work" I felt such guilt. I would push myself so much I didn't want them to see me any other way but perfect.  I can tell you that won't work for long. You have to allow your body to do what it's going to do. Stay as active as you can, each day. But when your body is hurting rest, be home, just sit with your son.  I can assure you our kids love nothing more than our time.
So keep in touch and I will look forward to hearing about a new doctor and your progress in this coming new year.  Merry Christmas my dear... Annette

[imber]

You are an inspiration because i know if you have dealt with this and have gotten through it all....maybe.... i can too....i know it won't be easy... but it hasn't been easy at all so far.... and the only thing that truly keeps me going is my son or i would have already given up.... because nobody should live through this kind of pain.... its continuous....never ending...its always there... like a really truly horribly bad nightmare that you can not wake up from  Somedays are better than others and i with my whole heart thank god for that.....i did sit down at the mall there wasn't really anything else i could do i was with my mom and my sister in law... she has just graduated and is looking for a job in medicine but she is a anasthestiologist so there is nothing she can do for me but she immediately took my bags from me and said u really don't feel well do u... and shook my head even though i want to be strong and say yes i am fine and try to move on... sometimes i can't... i think what nobody gets... even our family is that we want that even more so than them.... we want to be strong and so we are fine and get up and do all the things we have done all of our lives....if only they could understand how it feels how horribly disabling it feels to not be able too... it kind of kills me a little inside....my sister in law also says i should see a rheumatologist... she said she thinks one could really help me but i have to be recommended by another doctor...have you found any kind of medicine that helps this pain?  i'm so frightened to even ask that because my doctor makes me feel so horrible about even asking about pain meds... i just wondered if there is anything that even just soothes it....so that maybe its just a dull ache instead of this burning, throbbing, sometimes searing pain that just almost feels as if it is cutting through my body.....i did do a fm doctor search in my area... there are actually quite a few monday morning i plan on calling as soon as they open because as always i know i will be already awake.. lol... i have  to laugh sometimes because i believe laughter is better for the soul....more so than crying as much as i have done....aaahhhh life... atleast i have met you....i thank you for the replies and EVERYTHING.... you have given me hope... that i was honestly beginning to lose....i knew i found this place for a reason.... I hope the new year brings wonderful things to you....a bright future... and much less pain....and a lot of smiles, laughter, and love :)

[igarfy]

I feel so much for you. We all suffer horrible pain on a daily basis. Wonder why they think we have to look badly to feel badly. I wish the doctors would read these posts. BTW, mine does occassionally read them and if I run accross anything new I make a copy and take it to her. There is not really too much she can do but she likes to hear about the latest thoughts.

[concerned621]

I think you should definitely see a rhuematolgist. A lot of them specialize in fibromyalgia. If you have not done so after you see the new doctor ask them for a referral. Check your insurance, some insurance you don't need a referral. It sounds like you know that you do.
Do a search for the rhuematolgist in your area, again look for one that also lists fibromyalgia. They will do blood work for lupus and arthritis to rule them out. There are several medications for FM. I am taking oxycontin and percocet. I've had 7 surgeries on my spine so my pain  complicated. But there are many people with FM on the same medication. Are you saying you don't take any medication for pain?

I also take a low dose thyroid medication, I met with a doctor years ago and his research showed that women especially even if their blood work came back normal did quite well with low dose thyroid medication if they had fibromyalgia.  I've been on it for years, Levoxyl is the medication. I also take Cymbalta. It is an antidepressant but it is used for fibromyalgia because it helps with pain.  You might want to do a search and go with some information to your new doctor.  Remember to be your own advocate.  A good doctor is open to working with a patient.  Of course the doctor is the expert, trained and knowledgeable and you want to let them make the decisions but I happen to go to a doctor who will listen. He will tell me if he disagrees but he is open to learning and hearing what I know about FM.

A medication doctors immediately go to is Lyrica. I personally had so many problems with it. I would ask that others be tried before taking this medication. There are so many posts on this website of horrible side effects.  

Getting you out of this horrible day to day pain should be the goal initially. Going right to narcotics like vicodin, oxycontin, percocet might not  be great but they could help. They are medications you will build a tolerance to and aren't medications you just stop taking so research them prior to your appointment.  Please stress to this doctor how much pain you are in and how it is affecting your life.  Also discuss that you are not sleeping. Sleep is crucial.  I take trazadone. 50mg

Also look at the foods you eat.  Sugars, white flour, breads, white potatoes, white rice, tomatoes all can make pain worse.  
Also taking some supplements like an enzyme which helps with digestion helps a lot.  Other supplements that help me so much is Vitamin D 2000, and I started taking Iodine supplements a few months ago.  I would also ask the doctor to check your B12.  I get B12 shots monthly. If your energy is low and you have a lot of fatigue this can really help. You can also take a B complex supplement.   When you start to feel like you  are getting sick 2 things that really help is Grapefruit Seed Extract and/or Astragalus really boost your immune system.  
The goal is to build up your body in other ways, this will help prevent flare ups.

And Water. I can't stress enough how much water will help.  Carry a water bottle around with you.  Especially when you are out.

The other important thing and I know when you feel this bad it sounds crazy is moving.  I go to the gym 1-3 times per week and get in a warm pool. I walk.  I've been able to take off 20 pounds and it feels so good to keep my body moving. I still have a lot of pain but I can tell it's worse when I don't go to the gym for a few days.  I also sit in the sauna. The dry heat is amazing for pain.  I can't sit in the jacuzzi, that gives me flare ups and migraines.  The dry heat works better for me.  

So here is the list:
For Pain:
Cymbalta *anti-depressant, research shows it helps FM pain
Levoxyl *thyroid, studies showing low dose thyroid helps FM pain
(Narcotics): oxycontin, vicodin, percocet  (research prior to taking)
Neurtontin (for nerve pain) tingling, burning
Methocarbonal (for deep aches, anti-inflammatory) *take with enzyme protect stomach
Trazadone (for sleep) please try to get sleep!!!!

SUPPLEMENTS: (always research interactions with other meds and side effects)
Vitamin D 2000 *1 daily
Iodine *1 daily (research prior to taking)
Astragalus *take when feeling immune system is down
Grapefruit Seed Extract *take immediately onset of cold
CQ10 *excellent, helps with so much, research it
Fish Oil *excellent, helps with pain and so many other things
Enzyme *for digestion, most FM people need enzymes.  Enzyme therapies are used for  healing so many illnesses.  Highly recommend taking this if nothing else.  

Please stay in touch and I'm so happy this helps.  You are on the right track and keep looking at your baby.  You will figure this out for you and your child.  
Try not to expect your family to understand this even completely. It's hard to really get something we ourselves have not experienced personally.  Accepting that you have this and figuring out the path that works for you will allow your family and loved ones a better understanding. They will take your lead.  Don't forget to reach out and talk to them though.  Never feel like you can't. Trust their love always, they don't want you to suffer and they can't stop your pain but they can hold your bags, or come over and sit with you, or watch your child while you rest. So keep reaching out.
Let me know when you get your appointment scheduled
My best wishes to you as always!!!!!!  Annette