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Jun 26, 2015 10:48 AM

I love wakng up with a crazy migraine and jaw pain. Not
Nausea is present too......:(

Jun 26, 2015 10:53 AM

I'm sorry you're feeling so bad CopperChef35! I have TMJ and trigeminal neuralgia, and migraines that intermingle. I heat a microwaveable/freezable shoulder wrap and wrap it under my jaws, across the ears and over the head, and it helps a lot, besides my migraine meds. I'll be praying you'll feel much improved very soon! πŸ™πŸŒΌ

Jun 26, 2015 11:08 AM

I try and stay away from pharmaceuticals and only use them if utterly necessary for I have had allergic reactions to the ones I have tried so far, my body had a tendency to reject the medication, its not me being picky or not wanting to even try the meds I am having the same kind of reaction as my mother did in the early stages of her life when she first found out she had Lupus, the messed up part is the doctors can seem to give me a legible diagnosis for lupus, I am comparing my current symptoms to hers back when she first found out,
Not much I can do or say to them to make them realize that I could in fact have Lupus, kind of have to wade it all out until it gets worse for me and that is a real shitty way of going about it all, for me and my current life that is!

Jun 26, 2015 4:05 PM

Sorry about jaw pain and migraines.
I have a lot of tooth aches (bad genres for teeth coming in late and sideways) and the jaw/head aches are some of the worst pains I've experienced.
I also get dizzy and nauseous and feel like I'm sprinting while fainting when I sit up too fast. I also might have lupus, but I'm not sure.

Jun 26, 2015 9:38 PM

I'm having the TMJ and migraine again tonight myself. But I totally understand the meds issues, because like you I have had major reactions to many. Good luck & my prayers are with you! πŸ™πŸŒΌ

Jun 27, 2015 4:28 AM

What is Lupus? My doc called me yesterday and said my blood test showed iflamatory markers for this disease . Bad night for pain and sleep

Jun 28, 2015 7:01 AM

http://www.lupus.org/answers/entry/what-is-lupus is a link to tell you info on lupus. I don't have it. But my husband's cousin does and she has good and bad days, and she has to quit work later in the disease.

There are many on here who do so they'll be able to help you with questions. Do some research on it. And if not already, get under a rheumatologist because they specialize in inflationary diseases. I'll keep you in my prayers!πŸ™πŸŒΌ

Jun 28, 2015 6:16 PM

I have systemic lupus erythematosus. It is an auto-immune disorder. Your body naturally fights against "bad cells". Like a virus or something like that. (My fibro-fog has me searching for words... Interesting and a bit ironic because I am a medical transcriptionist and I know the words. Just can't fInd them when I want them. ) anyways, your immune system starts attacking the "good guys" in your body instead of just the bad ones. In my case, I have very low white blood cell count because that is one
Of the things that get depleted in me. I also have to keep an eye on my kidneys... That is one of my weakened areas because of the lupus. I also have a very high sed rate... Inflammatory marker... I also have quite a few other inflammatory syndromes.... Heightened pain sensitivity, chronic pain, chronic fatigue. I read this over and I am like...... Holy moley!! That sounds awful!! Lol. I must say that besides all the medical and holistic measures... This is what keeps me sane..... My grandson Ryan who is almost 8 and seems to understand better than most.... I love music and to sing and when I am singing to some wonderful song I like, I am feeling the music... Not so much pain. The same with humor... I love to listen to stand-up comics and LAUGH!!! I love to laugh. One of the things I like the most about myself is my sense of humor. It can be a little weird sometimes but I am always ready to giggle. Again, I focus on laughter and the pain somehow is just not quite as bad for that moment. And the last thing is that I have just taken up meditation. I find apps, podcasts, to find relaxation meditation. I need the guided meditation... It is a soothing voice talking you into relaxation, being in the moment, and I actually have gotten to a place where I actually did not concentrate on my pain for a while. Yes the pain comes back to my awareness after, but I always feel a bit more peaceful and relaxed. I have thought about yoga but am concerned it might aggravate my joints and tendons because of my hypermobility syndrome of my joints. Anyone have any ideas?
Oh yeah... sorry, Newty, I seem to get sidetracked easily. Lol. Definitely see a rheumatologist. Lots of times if you have lupus which causes chronic pain... You may also have other inflammatory or autoimmune issues. For example... I also have fibromyalgia, thyroid disease, hypermobility syndrome, Sicca syndrome, Sjogren's, osteoarthritis, ... All inflammatory disorders and all can cause widespread chronic pain. The more stress the more pain and the more pain the more stress. It is a vicious circle... And getting good healthy sleep is really difficult when in so much pain... I am finally getting sleep with lots of med adjustments... I have a primary care physician, a rheumatologist and a psychiatrist. Anxiety and depression go hand in hand with these chronic issues. Finally with lots of medications and meditation, I am able to go to sleep in a short time and I am sleeping through the night. I certainly am stiff when I get up but the difference in the way I feel overall is definitely noticeable.
Medications:
Levothyroxine - hypothyroidism (was hyperthyroidism status post radioactive iodine treatment).
Wellbutrin - anxiety, depression, OCD.
Oxazepam - anxiety.
Cymbalta- depression and pain.
Adderall - Oh yeah, I have adult ADHA too!!
Buspirone - anxiety.
Gabapentin - nerve pain.
Plaquenil - Lupus.
Methotrexate - pain from lupus.
Folic acid - because I take methotrexate.
Restasis - dry eye syndrome.
Prazosin - keeps me from having nightmares that the hydrocodone gives me.
Hydrocodone 5/325. Two every 8 hours. (I am never out of pain). I take Vicodin because I cannot take ANY NSAIDs at all. Was using piroxicam. It damaged my kidneys...
Flexeril - muscle relaxant. (This was the final piece of the puzzle. As soon as it was added, I started sleeping about 5-6 hours a night.)
Sounds like an incredibly long list of meds. If I didn't have them I don't think I would make it. But here I am plugging away.
WOW!!! Guess I'll rest my brains for a while. Lol. I wish a peaceful evening to all🌠

Jun 28, 2015 7:34 PM

JustBcuzz, I understand exactly what you are saying. I myself am suffering from many auto-immune diseases and they all cause chronic pain, fatigue, depression, anxiety, insomnia (because you keep waking when you move from the pain) and everything else that goes along with these illnesses. Last time I had my blood workups, my SED Rate was way off, my white blood cells were screwed up and I am so messed up. Each year when I have my checkup, I'm told that my inflammation rate is very high and they have put me on NSAIDS, narcotics, natural herbs, physical therapy, massage, virtually everything you can think of. I am never, ever out of pain. After well over 20 years in pain, I am currently taking per day 300mg of Morphine, 120mg of OxyCodone for breakthrough pain, 3mg of Ativan for anxiety, 32mg of Zanaflex for the muscle cramps and spasms and 30mg of Restoril for sleep. (Now, by DEA standards, I am considered to be on an extreme amount of medication. However, if I didn't use these meds, I wouldn't be able to get out of bed and function at all because of the pain). This amount of medication is what I am on AFTER it has been cut down!!! I have never come up with incorrect levels on either blood tests or urine tests, never abused my medication and have already had the doctor write a prescription for the incorrect amount of pills (too many) and gave it back and said that they made an error and they needed to give me less. I have never given any of my doctors to mistrust me in any way when it comes to my meds and I only get them from ONE office and that is pain management. Each year, in January, I have to sign a contract with the office that I will not accept any medications from ANY other doctor or even the hospital emergency room because I get my monthly medication from Pain Management. I am able to skip doses, I have to drive my elderly Dad to appointments at times and sometimes need to do the same for my Mother and will NOT drive if I have taken my medication within a certain amount of time. I don't get nervous and look at the clock thinking, OMG, I need to take my meds... Sometimes I am wondering why I am hurting more than normal and realize, Oh yeah, you ass, you haven't taken your pain meds. This in itself shows the doctors and myself that I am not an addict. However, as described above, I AM considered an addict according to the DEA. Believe me, I know that the majority of us would rather never take any of these medications at all but the pain is so horrendous, what choices do we have. At 50 years old, I am not going to spend the rest of my life in bed or an easy chair and just rot away. There are things that need to be done and I am not going to have someone else do them for me. Don't get me wrong, there are days where I am bedridden with a migraine and other horrible pain and cannot even open the blinds because the slightest light coming in my room is blinding and painful. I can't have any noise, not even the tv on for background noise because it makes the migraine worse and I just have to put something like a compress over my forehead and rest. I don't know why I've gone off on such a tangent. I guess because, as pain sufferers, we tend to be labelled drug seekers and that really makes me angry. Well, I am off my soapbox for now and I hope that your head feels better. I really think the idea of seeing a neurologist is a good idea, one never knows if there is a way that you can be helped if you try. I hope everyone has a peaceful night and less pain.... Sweet Dreams to all.

Jun 29, 2015 1:10 PM

Had a good night sleep until my husband was looking for something and was upset because I didn't jump out of bed to help him!!!! Wat a minute.... Did you say JUMP out of bed????? We all know that isn't happening. LOL.

Jun 29, 2015 7:40 PM

LMAO!!!! With the pain that we all deal with, I don't think that jumping anywhere is happening anytime soon..!!

Jun 29, 2015 8:16 PM

JustBcuzz, I noticed your on restasis for dry eyes. Do you have dry mouth, nose, throat (swallowing) and skin too? If so, you may have Sjogrens instead of just dry eyes. I have it and Hypothyroidism, and the fibromyalgia, and they're kicking me today! I think it's from overdoing yesterday & early today. πŸ™πŸŒΌ

Jun 29, 2015 9:31 PM

Yup, I have been diagnosed with Sjogren's, hyperthyroidism treated with radioactive iodine and now hypothyroid, lupus, IBS, fibromyalgia. Having a huge flare myself. I'm so stressed by my husband rarely acknowledging there is anything wrong with me. He says he understands but then wants me to do something that maybe I used to be able to do, but certainly not now. I had a seizure (a one time thing!! Thank god.) it was about 4 years ago. For a long while He was really concerned and helpful and loving and thoughtful. You know why? Because I had the seizure right in front of him in a crowded store. He saw it....he saw the EMTs take me away in an ambulance. Why can't he "see" the pain and frustration, the fears, the guilt, the isolation and loneliness? It's even harder cuz my Mom passed away a year ago. She was my shoulder to cry on.... I just miss her so much and I end up crying like I am now ... And just feeling worse physically and emotionally. Then I get more anxious, depressed and then here comes the major pain.... Someone stop this merry-go- round, I want to get off!!!

Jun 29, 2015 10:40 PM

JustBCuzz, I'm sorry for your situation. I have many of the same diagnosis that you have and the pain most of the time is overwhelming. I'm sorry your hubby is not understanding and just because you can't "see" the pain, he doesn't believe it is as bad as you say or it's not there at all. Many of the things we have are among what they consider "silent diseases" and we also suffer in silence most of the time. I would ask your husband to think back and renew the absolute worst pain he's ever experienced in his life and then tell him to imagine having that pain every day, all day with no reprieve and ask him how HE would feel if you didn't believe that he was in excruciating pain. Maybe he'll think twice before doubting you again (at least for a little while). I hope you get the support and comfort you need here with our community family and hopefully your husband will join in with the group in supporting you. Have a blessed night and hopefully less pain tomorrow.

Jun 30, 2015 12:06 PM

JustBcuzz, my husband felt the same way, until I started making him go to appts with me. I told him ahead he could ask whatever he wanted... He put his foot in his mouth multiple times getting the 1-2 from several doctors. Due to that and my rapidly deteriorating health, as you said "in front of him", here truly worried and helpful now. If I could I'd sit and hold you to let you cry on my shoulder. My mom meant the world to me and she went to heaven in'99 from serious health issues. I understand that empty feeling no one else can fill. But we are all here for you!

As overwhelming as I get, you all help me through it. I thank God for friends who truly understand and don't judge me, who don't tell me, " take some Tylenol and you'll feel better " or try to compare their issues as if we're in a competition of "who has it worst!". Anyone here who talks about their issues is doing so out of showing 1) they truly understand and 2) what health issues they have experience and insight with (to help others know who they can ask questions from). Just hang on to all of us and we will help you through. Praying for you! (((Hugs)))πŸ™πŸŒΌ

Jun 30, 2015 5:46 PM

You folks are awesome. Thank you for your kind support.

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