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I'm new in pain need thoughts

Aug 02, 2015 8:34 PM

I'm still trying to be diagnosed but been dealing with a joke of a Dr since last oct. Been told maybe lupas, fibro, arthritis, now last visit because he couldn't think of anything he said connective tissue disease. I have intense throbbing nonstop pain every single day in my hands. Right now it's going up my forearms. At time I feel it in feet. It's been so bad I cannot move and had to be taken to er. I'm 35 yrs old and feeling hopeless. I have a 1 yr old who I can't take care of the way I want because several times a week I can't pick her up. Single mom makes it harder. I've had nerve test done came back fine, blood works few months ago didn't show anything. Feel crazy because I know something going on but not knowing is the worst. I've begged for referral to a specialist but was told can't refer me until he knows what it is. My Dr will only give me tramadol which don't help even when taking 12 a day. I have to pay more money and be seen at urgent care, wait for hours to get hydro 5s. I'm tired of this effecting my life every day. I don't ever go do anything, too tired and hurting. No way to live. What can I do until waiting to be diagnosed? I fired my pcp and now trying to find new one but I live in very small town and have to drive 1 hr away and wait 2 months on top of take time of work and figure out someone to watch baby. Sorry to sound so negative and POOR ME. Beyond frustrated.

Aug 02, 2015 8:38 PM

I should state that pain is daily in fingers, palms, knuckles all over hands, wrist and now arm. It moves to different spots throughout the day and then to the other hand. It's crazy how it's in different spots all the time. The pain in thumbs down hand and pinky down hand are insane then along with wrist. It's hard to describe. Wonder if I'm alone with this. Would be nice to find someone else with this. Thx

Aug 02, 2015 9:29 PM

Hi Kat welcome to the group. I unfortunately don't really have any advice for you since you already switched out your dr, but i just wanted to let you know you're not alone in your pain and frustrations.

I was fortunate, if you can call it that, to be diagnosed with one blood work up for my RA and i cant imagine how hard it must be to not know what the heck is going on.
I'm so impressed with you taking care of your baby all by yourself and dealing with your pain on top. With my RA i made the difficult choice to not having kids and it was a very hard conclusion for me to come to. I CAN imagine how hard it must be for you and thats why i made my decision.

You're little girl is very lucky to have you and try not to be too hard on yourself; you're doing your best with the current shit storm you've been given.

We're here to support you when you need it, and i have no doubt some of the others will come through with some advice and similar personal experiences so you dont feel so alone. Hang in there pretty mama!!

Aug 02, 2015 9:38 PM

Oh wow thank you so much I'm in tears reading your post. I do beat myself up the guilt about not being able to do much with baby. It's awful. This all started couple months after I had her or I would have for sure debated about having kids with this. I feel for your situation and the selfless decision you made. No way can it be easy. Do you mind sharing some of your symptoms, how long you've had it, how it started, what meds you're given for pain? I've been told RA begore among other dx and it makes sense but don't know much about it.i don't even know much about connective tissue disease. Did a Google search recently and you know how that goes. Thanks for your support

Aug 02, 2015 10:38 PM

I'm glad i can give some comfort! And thank you for your response on me choosing to not have children. There are a lot of judgy pants out there who don't understand.

Not at all! Im female 33 and was diagnosed 6.5 years ago. Its an auto immune disease so my immune system attacks my body. It started with a swollen thumb. Lasted a couple days then went away. Couple weeks later a swollen finger. This back and forth continued then just stopped going away and turned into varying degrees of swelling. Then i started to have muscle pain and joint sensitivity. Right from the start i kind of figured it was rheumatoid arthritis. Its very prominent in my family and i just KNEW. I still procrastinated the crap out of going to see a dr, im not a fan of those guys lol.

I've gone through tons of drugs (arthrotech, plaquinil, sulfasalasine, methotrexate -oral and injectable) those were the main players and either they didnt work or gave me unacceptable painful side effects (mouth sores, nausea, chronic hives, hair loss etc)

Now i didnt list a ton of drugs, but those were over the course of 5.5 years...5.5 years of drugs not working. Because of the types of drugs, they take months before you see the full effect or if you need to be increased. Its a frustrating and long process, or at least it was for me.

I was able to figure out that my eating 100% affects my disease and by cutting out certain foods i was able to cut my chemo drug dose (methotrexate) in half. That combined with Remicade, which is a biologic has FINALLY put me in a pretty decent place.

I have had to get rid of a couple shitty dr myself, so don't give yourself grief for doing it, im proud of you for doin it so early! Its hard to stick up for yourself sometimes but just think of your baby girl and be strong and confident in what you want and how you want to be treated. No one will look out for you but you and never assume people do their jobs properly because i have SO been burned by the healthcare system. Call to check up on appointments and test results if they are not getting back to you, ask lots of questions, read about the possible drugs and treatments (once you know what the heck you have) knowledge is power for us!

And most importantly learn from us! We are a ginormous cesspool of pain and suffering and have years of experience backing us!! Shit docs, surgeries gone bad, accidents, chronic diseases, mystery illnesses, Pon farr , Vampirism, Cooties!! Ok maybe not the last three...but it wouldn't surprise me.
One of the very few things we have going for us is each other; to share and teach and learn. Chronic painers unite!!

Aug 02, 2015 10:50 PM

Well said SweetSassy!!
Kaz79 - it is a quagmire and too many of us continue to go through.
My kids are now fully grown but I was a single mum of two and I can relate, thankfully mine were 11 & 9 years old when it hit me, so much easier to explain to them what was needed.
Still really tough with lots of day to day things and not wanting to interrupt their childhood with adult rubbish. There are good days and bad days try not to beat yourself up, take help when you can.
Stick up for yourself.
The small town does add another dimension ... I eventually moved - while that came with its own bucket of stress initially - long term it worked out better with more resources.
In hindsight I have worked out that the high stress / or beating myself up periods where the most intense / prolonged flare ups - not the cause but definitely affected by it.
Different things will work for each of us - just keep experimenting until you find what works for you.

Aug 02, 2015 11:06 PM

Oh! And i wanted to mention IMAK compression gloves. I got a pair off amazon for $30 i think and they really help ease the pain in my hands some days. I didnt have them when i was unmedicated though, so im not sure if you're maybe too far gone, so to speak....if that makes sense. But they help reduce swelling and increase circulation. I use them all the time at my administrative job and at home.

Aug 03, 2015 12:34 AM

Thays guys I love that I'm getting g so much support and help after feeling so alone. My friends and family are so sick of hearing thst I'm in pain I'm to the point that I just say I'm fine even when I'm not. My fingers swell like saugage. I can't tell if the pain is in joint or muscles but it radiates and throbs and does not let up. I've been feeling non stop pain. For over two weeks with no help. I was given steriods at hospital thst I took whole cycle of they did help but I swear I had to of gained 10 lbs. Dr said they have bad side effects so don't take unless have to. It's nuts as it sounds my pain always worse on weekends. Fri evening it comes on really bad and it's Sunday night and I'm miserable. I work at home thank god but I work on laptop all day which I'm sure doesn't help. The dr I fired like I mentioned only gave me tramadol. I've been in his office crying hysterical so many times at his mercy and leave feeling so blown off. I called his office last weekend the on call after hrs number twice and didn't even get a call back. After last visit when I was once again crying and he simply said go see the gal at front desk who will send you for blood work and he let me walk out without anything for the pain. That's when I had it. Yes I do need to see if whatever this is shows on blood but just cause he doesn't know what I have doesn't mean he leaves me suffering Hugh and dry. I hate going to drs cause they make me feel like I'm drug seeking when I'm not. I know so many people in my town thst see this same dr for made up issues like back pain and they all get pain meds and here iam with something legit and nothing. I'm the one with expensive insurance and all the state benefits people pay nothing getting what they want and are turning around selling them. It makes me crazy. Nothing against state assistance for people that don't abuse it. I'd love to have it but I don't qualify. I'm totally venting sorry. I have a friend who calls the dr and just picks up hydros from front desk, doesn't even get seen by Dr but I call on call drs for help cause can't move and get ignored. Went to urgent csre last week and thst dr did referral for a RA doc in next biggest town. Still waiting to find out when appt is. Hope it's soon. I also have psoriasis but haven't had a flare for many many years when I told urgent care dr he immediately thought psoriasic arthritis. I had already told my pcp same thing but was blown off. At this point I just want to be on treatment plan that works no.matter what the diagnosis is.

Sweetsassy you mentioned chemo drugs??? Never heard of that and that scares me, can you explain that or did I read it wrong? I have alot of things to learn about all this stuff. All new to me. A year ago I was fine until October and it's went from 1 or 2 times month to daily. What other tests can be done if doesn't show I'm blood and nothing in nerve test? Dr thought maybe disease hadn't progressed enough to show in blood test took in may and wanted me to wait couple more months before doing again. Guess will have to wait for referral since again fired that dr and now don't really have a pcp. Thanks again guys

Aug 03, 2015 1:12 AM

oftenesn i just wrote a huge thing and lost it!

Yes, methotrexate is a form of chemotherapy. I'm in Canada and it's quite common in treating rheumatoid arthritis. It suppresses the immune system to stop at the progression of the disease and is often used in combination with another drug along with an anti inflammatory.

Honestly it's best if you can overlook the awful side effects that are a possibility when taking these types of drugs. Once you get to a place with less pain then its much easier to focus on alternative methods.

But believe me, if you're in pain long enough you get to a point where you dont care what the F they give you, as long as it makes the pain stop.

We're all on a lot of drugs but I've been able to cut some and come off others entirely by focusing on my eating habits. I'll be on drugs forever, but i want to be on as little as possible. And id be happy to talk to you about that as well once you've been controlled :)

Aug 03, 2015 12:19 PM

Kat79, the whole purpose of going to a specialist is so that you CAN get diagnosed. If it were meant to be the other way then medicine would go back to the simpler days when your GP took care of everything. Sure, there were specialists but most of the time your family doctor was enough. Now, you go to your GP, they look at you and send you on the journey to hell through specialist and tests, etc. it's a pain in the ass. I'm so sorry you're dealing with this idiot, you need to find a new doctor. Also, my heart goes out to you being a single mom with a one year old. Remember that what you are going through does NOT reflect on the living mother that you are. Just because you can't pick up your child, does not make you a bad Mom. I pray you can find the doctor you need that is able to help you. I wish you the very best of luck and hope that you can find the support, compassion and company that you need with our community family. 💕🙏🏻🌻

Aug 03, 2015 1:09 PM

Kat79, It's really good that you were referred to a rheumy doc because they're who will likely give you the diagnosis and treatment you need. My PCP has hinted at diagnoses on and off for 3-5 years. The past six months I've been diagnosed with hypothyroidism and sjogrens, both autoimmune disorders and hinted at by the pcp, but diagnosed by an endocrinologist and rheumatologist. I have constant stiffness and throbbing in various fingers and toes now and I'm hoping I'm not getting RA on top of it all, and the fibro. But if I am I will have this community to help me deal.

Don't beat yourself up about your abilities as a mother. At 28, when my youngest was 1 and my oldest 5, I had severe neck and back pain from auto accidents. My baby wanted to be held but I couldn't lift her. I had my 5 yr old help her learn to climb into my lap and onto the bed. No I wasn't able to do the same for and with her, not in the same way, but she grew up knowing she was loved. And she's grown into a caring and compassionate young woman. You do your best at loving her, and it won't matter how you manage to do things with our for her, just love her. Reading stories, singing songs, watching TV shows, little tea parties, making mud pies, pushing her swing, etc. You are and will be a good mother. And if you need a break look into friends, family, or mother's morning out (usually church program, pay small fee for 2-4 hr daycare). You'll be in my prayers! 🙏🌼

Aug 03, 2015 2:10 PM

Tha k you to everyone your support and advise means so much to me. I feel you all know what I'm going through. I never knew this existed until downloaded pain tracker ap. Feeling blessed. Last night took 3 more tramadol, more steriods, a weak muscle relaxer and a naproxen and feeling better. Hoping it doesn't change by dark. Chubby swollen fingers crossed lol

Aug 03, 2015 5:47 PM

Kat79, I forgot to mention something. Besides the IMAK hand gloves, which I have a pair of, I also purchased a pair of Isotoner Therapeutic open-finger gloves from Amazon. I actually like them better because the stitches seams are on the outside, and they are longer so they come up higher on the wrist. I couldn't make it through winter without either pair. Someone on this community told me about the IMAK brand. 🙏🌼

Aug 03, 2015 5:50 PM

Good tip, I'm going to check those out myself!

Aug 03, 2015 9:40 PM

Thank you so much I'm going to have to get me a pair..I can imagine how bad its.going to be this winter..will be my first winter with it so much more worse than last year.

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