Any Bumpies out there with Chronic Pain?

kayleathers

I'm looking for fellow bumpies living with chronic pain to talk to and support each other.

I'm 21 and hurt my back in fall of 2013 when I was lifting a patient. (I was a home health nurse.) I'm I have 3 herniated discs, sciatica and total loss of sensation in my right leg. I'm bed bound usually two or three days out of the weak. Depending on my pain levels, sometimes I can only sit up for half an hour to an hour at a time. DH is amazing and helps me in every aspect without a second thought. I am, however, dealing with a lot of ignorance, misinformation, and lack of empathy from both my family and my in laws.

I'd love to chat with anyone dealing with chronic pain or other health issues. I understand there is a ton of stigma with many aspects of chronic pain, so if you'd rather PM me, feel free

Knottie29904685

I have back issues from a car accident. It's been really hard to deal with not taking anything other than Tylenol, resting and heat. Im doing another round at Physical Therapy hoping that will help. Most people who haven't experienced chronic pain have a hard time understanding, so I usually don't talk about it.

ashwise

I'm in the same boat. I have rheumatoid arthritis and chronic migraines and the pills that help me I'm not allowed to take now that I'm pregnant. I've been suffering a lot so far and just miserable. Tylenol just doesn't cut it. For my migraines I get monthly massages and for my arthritis I use heat and bio freeze. Still miserable though. Sometimes I hurt so bad I can't even get out of bed :-(

collegebound08

I have a double lumbar fusion and I have had terrible back pain the last week. It's really hard to not be able to manage the pain like I'm use to. I was going to talk to my doctor to find some suggestions. I hope everyone finds a way to manage and feels better soon!

nbwells

I've been in pain management for years now due to herniated cervical discs which cause chronic migraines. I was told to continue pain management from my OB and taper down with his assistance by the 3rd trimester. If you'd like to start a private group I'd be happy to join. Dealing with misinformation and judgement by some others is not helpful during pregnancy either.. If you're a nurse, I'm sure you have access to most of your answers but if you ever have more, mommy to mommy, please let me know

kayleathers

Somehow I didn't see any of these responses until now! I thought I was alone!! So glad to hear that I'm not. (Not glad that there are others in the same boat, but glad we did find each other and can support one another.) I'm finally off of my pain meds, but it took a week in the hospital to be monitored as I was tapered down. The baby was monitored 24/7 and went into distress twice so I had to be remedicated. That was weeks ago and now out of no where I'm getting criticism from every corner of my social circle for taking any meds whatsoever. No one will listen to the facts about opiate use during pregnancy, the dangers of going without it, or the true effect it has on baby. I've had at least three people tell me that my baby is going to "come out retarded." I've even printed out reading material for their education but no one can be bothered.

Obviously everyone gets unwanted opinions about what they should and shouldn't do during pregnancy, but this is much farther than that and the only course of action I can think of is to cut those people out of my life.

Is anyone else dealing with this or something similar? Have you been able to resolve it?

lraubaugh

I am 24 and have been dealing with chronic pain for 11 years.
I was diagnosed with rheumatoid arthritis at 13 and have several other skeletal issues including scoliosis, herniated discs, frozen SI joints on both sides, 2 ribs out of place, limited mobility in ribcage, out of place kneecaps and collarbone, and chronic sub scapular bursitis.
I look completely normal so nobody understands that I am in so so much pain every single day.
I don't take any medicine because that limits my ability to function, but I do have to go to physical therapy 2x weekly for the past couple years (expensive!!) and I was told I would have to be in some form of physical therapy for the rest of my life.
Pregnancy has made it a lot worse, especially with my back issues.
I don't have a lot of optimism to share besides that you're definitely not alone, whether the reasons are the same or not, pain is pain and I've definitely been (and am) in the same boat.
Do what is best for you as far as the medication goes, as long as you are well read and educated on the subject, it's up to you and your docs. Don't listen to any negative Nancy's who think they know what's best for your baby!!

rebeccalynn27

I have fibromyalgia and suffer fromcchronic migraines. I was diagnosed in 2007. Most people don't understand because I look fine even though I'm in constant pain all day every day. I agree with PP. You are not alone and you need to do what's best for you and your LO. One thing that has helped my family understand what's going on with me is to educate them. If they care they will listen and read things.

mkpinkrains

I was diagnosed with fibromyalgia at 18 which is extremely rare. I have many health conditions including POTS (fainting), chronic migraines, and liver problems. I have had 2 healthy pregnancies in the past and actually find that some of the fibromyalgia pain eases up during pregnancy because all of your ligaments and joints naturally soften. I get awful morning sickness though which sucks and the headache! Ahhh. Because of the chronic fatigue and pain I suffer from some anxiety and depression. And it has been SUCH a hard decision to not take medication. Right now. Sometimes I really feel like I need it, but I am scared of harming the baby

Soyyoyary

I have fibormyalgia.. I can't be without meds because I will never move.. With my last pregnancy my fibor flared up I never experienced so much pain in my life. Doctors inform me that for some fibor eases while pregnant others it gets worst.. I'm glad to say that this pregnancy my fibor so far is controlled..

kayleathers

mkpinkrains said:

I was diagnosed with fibromyalgia at 18 which is extremely rare. I have many health conditions including POTS (fainting), chronic migraines, and liver problems. I have had 2 healthy pregnancies in the past and actually find that some of the fibromyalgia pain eases up during pregnancy because all of your ligaments and joints naturally soften. I get awful morning sickness though which sucks and the headache! Ahhh. Because of the chronic fatigue and pain I suffer from some anxiety and depression. And it has been SUCH a hard decision to not take medication. Right now. Sometimes I really feel like I need it, but I am scared of harming the baby

The criteria for ME (chronic fatigue syndrome) was just changed and a diagnosis of POTS is a huge part of the criteria... Not sure if you've read up on ME but you might want to check out the new criteria. Lots of new people are being diagnosed since the changes. Even without it though, the fatigue from the pain is so frustrating and the added energy pregnancy takes is very taxing. I spend 22 to 23 hours a day in bed or on the couch. I have a feeling I'll be put on bed rest around 6 months, but it really won't be much of a change!

How is everyone coping with going off the med changes? Its hard for me to tell what is pregnancy related or med related.

kclilkim

I suffer with psoratic arthritis along with the skin condition is called psoriasis / seborrheic dermatitis. been having the skin condition since I was 7 years old, the psoratic arthritis did not start until 4 years ago

JessLawson

It's nice to see I'm not alone too. Two years ago I had a spinal fusion from T2 to L4. I have 2 18 inch rods and 28 screws. Though the fusion saved my life I now have arthritis is my hips, sciatica on both sides and chronic pain in my back. After I found out I was pregnant my doctor discovered I have several screws coming loose and may need an additional surgery after I have the baby. They expect my pain to only increase throughout the pregnancy. What fun.They

JessLawson

Don't know why the word they is at the end of my post. Sorry about that.

mkpinkrains

kayleathers said:

mkpinkrains said:

I was diagnosed with fibromyalgia at 18 which is extremely rare. I have many health conditions including POTS (fainting), chronic migraines, and liver problems. I have had 2 healthy pregnancies in the past and actually find that some of the fibromyalgia pain eases up during pregnancy because all of your ligaments and joints naturally soften. I get awful morning sickness though which sucks and the headache! Ahhh. Because of the chronic fatigue and pain I suffer from some anxiety and depression. And it has been SUCH a hard decision to not take medication. Right now. Sometimes I really feel like I need it, but I am scared of harming the baby

The criteria for ME (chronic fatigue syndrome) was just changed and a diagnosis of POTS is a huge part of the criteria... Not sure if you've read up on ME but you might want to check out the new criteria. Lots of new people are being diagnosed since the changes. Even without it though, the fatigue from the pain is so frustrating and the added energy pregnancy takes is very taxing. I spend 22 to 23 hours a day in bed or on the couch. I have a feeling I'll be put on bed rest around 6 months, but it really won't be much of a change!

How is everyone coping with going off the med changes? Its hard for me to tell what is pregnancy related or med related.

That's interesting..I will have to look into ME. I feel like I just have so many random things, but I have always thought there must be some underlying cause. Autoimmune or something, but tests are always negative or inconclusive. I'm just always exhausted and in pain. I would rather deal with pain than being so tired all the time! I feel so lazy and like a bad mom. I'm only 27!
it's also hard for me to tell what is pregnancy related and what is my normal crazy self lol. Super dizzy, headaches, exhausted, moody, anxiety..but again those can all be pregnancy lol.

kayleathers

mkpinkrains said:

kayleathers said:

mkpinkrains said:

That's interesting..I will have to look into ME. I feel like I just have so many random things, but I have always thought there must be some underlying cause. Autoimmune or something, but tests are always negative or inconclusive. I'm just always exhausted and in pain. I would rather deal with pain than being so tired all the time! I feel so lazy and like a bad mom. I'm only 27!
it's also hard for me to tell what is pregnancy related and what is my normal crazy self lol. Super dizzy, headaches, exhausted, moody, anxiety..but again those can all be pregnancy lol.

Not sure what's happening with that quote... lol.

I feel like I have so many random things too! My medical history is miles long... I hate seeing new dr's. I gave a simplified version, but I also have a tumor on my thyroid (benign with a 25% chance of becoming malignant,) sciatica, IBS, chronic headaches, Insomnia, hypertension, arthritis and bone spurs all over my lower lumbar and all of this just popped up within the last two and a half years. My doctors have run every test we can think of. They were convinced it was some sort of autoimmunity disorder, but nothing has ever come up.

I'm sure there's an underlying reason. Ever notice how many people with one form of chronic pain also have fibro? That can't be a coincidence. We just have to hope they find the cause in our lifetimes... so we can say "shove it" to all of the people AND DOCTORS who tell us we're just over dramatic or hypochondriacs. My favorite is when I go into the E.R. because I haven't been able to walk in days: "You're just going to have to get used to it." Then there's the people who criticize me for getting pregnant. Because I don't deserve to carry a baby just because its going to make my doctor's lives a little more complicated. (But really its just more money in there pockets anyway, right??)