Please help me!

[Sunnyraven]

Hello everyone,
Here's my background: 36, woman, 140 (lost 25lb since 11/12) I was diagnosed with psoriasis at 15. I started humira in 2007 to control the skin lesions. In 2011 my ex dislocated my shoulder and I had to discontinue humira while I had two surgeries in 5/12 and 10/12. A week before my second sx I was let go from my job of 7 years! Paid cobra for two months, then got on a state funded program that only lasted two months. At the end of the year I could barely walk so I saw a rheumatologist who diagnosed me with psoriatic arthritis and put me on pred and humira again. It helped a lot, but it was a very depressing time. And I'll be honest I drank to dull the pain, depression and insomnia. I went to psychiatrist who diagnosed me with major depression, anxiety and PTSD.
I quit drinking and smoking thinking these were exacerbating my issues. I felt better at first so I decided to gradually wean off trazadone, clonazepam and Wellbutrin. On top of not being able to pay for them, I really hoped I didn't need them (10-7mo ago). I did good for the first couple of months, then the daily headache, severe neck pain and fatigue started. I finally started a headache diary in 2/14. Most of my pain is in base of skull, arms and shoulders, lower back/buttocks and feet. Yesterday I finally saved the $175 to see my rheumatologist and he just seemed to blow me off. My mother had suggested fibromyalgia, but he said I have too many symptoms and need to see a GP. I scheduled an appt for Friday, which I can't afford
I am trying to start my own company, which allows me to be flexible bc mornings are horrendous. And If I can work, I last 2-5 hours (had to cancel twice in 7 days).
So sorry for the long message but just want to give the whole story. Oh, so I'll I take now is ibuprofen, humira and excedrin. I have used acupressure, acupuncture (can't afford), massage (can't afford" and guided meditation (when I don't have a migraine) and yoga which is really hard at beginners level. And I eat a healthy, fresh foods (and have never eaten fast foods)
I am desperate to find out what's wrong with me. I am miserable with headaches, neck and back pain, severe lethargy and now I'm feeling depressed, moody and anxious.
I don't know what to say to the GP, especially since own rheumatologist blew me off. Plus I can't afford a bunch of tests, and/or medications. PLEASE HELP! I want to know what u all think!
Ty so much,
Tammy

 

[katydid]

Hi Tammy! I'm Katie, 25, and have a slew of health problems lol. First off, let me say welcome, I'm so sorry you're here but glad at the same time because you found us!.... What a mess! I feel your pain! I've had health problems since I was a child, but nothing has ever compared to everything I've been going through the past few years... It really takes a toll on you... Regardless if you have fibro or not, this is a great community to learn and vent... That being said...

(btw if you see typos or words that don't belong, I'm sorry, I'm on my tablet and it likes to make changes that I don't notice sometimes unless I proof read what I write 27 times lol)

I think it's time to fill your gp in on everything going on.. What I mean by that is, before your appointment, sit down, and make a list of all symptoms. Everything, big small and in between. Try to remember examples of some, possible triggers for some, and even dates of when you feel symptoms started.. Don't hold back. Your gp needs to get a grasp on the severity of how your body is working for you so he can figure out a direction to go in, what testing needs to be done (ie: any scans such as x-rays or MRI's, any blood work, ekg, etc. Basically anything to get to the bottom of what's going on, whether it's one condition or multiple diagnoses.)
Also, let him know that things are difficult financially, so you guys can prioritize how you're going to proceed... That's very important right now, as certain tests may not be a top priority, more of a 'well we've tried everything else, let's give this a shot..."
Write down whatever questions you might have, and basically anything that you think is relevant... I try to do this for each Dr, as I forget things and will remember after I've just left the parking lot lol...
Idk what kind of relationship you and your gp have, I hope it's a good, trusting, and care g one, because some Dr's especially gps are not like that and your concerns can get brushed over... This is another reason I write things down because I can remind myself then if something gets dismissed and I can bring it up again to get an answer...

It sounds like your rheumatologist is kind of flaky in my opinion... I'd start asking around and researching for a new, more compassionate one...
Most likely, your gp is going to refer you to other specialists, so be prepared... I know, not the best thing to hear for your bank account... But let's be honest, a gp can only do so much for you.... My suggestion, a good neurologist.. They may want you to see a neurosurgeon for possible spine issues, maybe an orthopedic Dr.. And see if they would recommend any other rheumatologist, I mean you don't want to bash your current rheumy to him, but let him know your interested in seeing someone new... It can't hurt to ask...

Have you ever had any blood work done to rule out auto-immune diseases? Or any scans of your spine or brain? I would hope so, but if not, be prepared that blood work and scans are probably going to be up to bat in the first round of testing...
Personally, I feel like it could be a combination of ailments your dealing with... Maybe fibro, maybe some disc problems or nerve problems with your spine... I mean, headaches can be caused by any number of health issues... I have many types of headaches; I've got 'sinus' headaches, migraines that can be cause by any one of the many triggers I've got (ie: grapefruit, my period, fluorescent lights, the weather... There's probably 2 dozen triggers I've come to figure out over the years lol), I get headaches from my spine injuries, etc. That's where your headache diary is going to come in handy. I'm actually very interested in how your diary is composed? Are you just logging dates and simple info? Or are you going into detail about possible triggers, maybe the foods you've eaten, the weather, etc?... If you don’t mind sharing, I'd love to hear, because I'm always looking for new ideas and ways to keep my headache diary! Lol

I know I'm writing a novel, I'm sorry, I can't sleep and feel like I need to exhaust myself, and I'm hoping writing will help! Lol

What kind of research have you done on fibro and or your symptoms? Do you feel like it's a possibility? What symptoms match up? Which ones are a mystery? Do you have any of the tender points? I mean that's something maybe your mom could try and do at 'at home tender point' test to see if you have the possibility of fibro?... Although, if you don't have the classic tender points, it doesn't mean fibro isn't still a possibility... There are many members here who have been diagnosed and don't have many or any of the tender points...

There's so much more I could write, but I'll leave it at that for now... I'll give you a chance to answer lol and see if anyone else has any input or advice!

Like I said, this is a great community, and I'm really glad you found us. Please take a look through old and new posts, as there is sooo much information! Everyone here is so nice, caring, knowledgeable, you won't be judged here either so vent away! This is a safe zone and personally, I'm so grateful I found it a year ago... It's so nice to have a place where I'm not the outcast, whiner and complainer, crazy (because some people still think it's all in our heads...), and I really think you'll love it here! Please read up and join in!

Gentle huge and best wishes,
-Katie

 

[katydid]

Omg I really did write a novel! I'm sorry! Lol

 

[ramsvcu]

Hi Katie,
Sorry u are having so much trouble with docs. I can relate. I saw a neurologist for 1 yr. for awful headaches in back of head. He gave me Gabapentin for nerve pain saying that I had occipital neuralgia. After a yr. he said I cant help you anymore and refered me to a pain specialist who said my head and neck pain was coming from arthritis in my cervical spine. Kept me on Gabapentin and started physical therapy. Went to psychiatrist because I was depressed (go figure, chronic pain causes depression and anxiety) who put me on Cymbalta. After 5-6 yrs. of physical therapy once a yr and juggling different meds around, I'm still in daily pain. Work in job that blows cold air conditioning on me all day which sets me up with muscle spasms in shoulders. No one at work understands what I have to deal with. I wear underarmour under my scrubs and a wind proof jacket over that and a lab coat and still suffer. I recently saw a rheumatologist who tested the tender points on body that indicate fibromyalgia and said that's what I have. Pain specialist never tested tender points because he said I couldnt have fibro because my pain is above the waist. Unfortunately there is no magic pill or remedy for fibro but Xanax and occas. alcohol help when nothing else will. Hope you can get some better answers. Think when they say a doctor has a medical practice they're right cuz they are still "practicing" and dont know all the answers but think they do.

 

[Trellum]

Tammy, it breaks my heart to read that after saving all that money to pay the rheumatologist he just blew you off. The guy is obviously a jerk and good for nothing, shame on him for being such an awful doctor! I've said it before and I will say it now... some people shouldn't be doctors! So sorry for you!

I will keep it short and nice for you, because I strongly believe the last you need right now is to read a whole wall of text! What I think you should do is to ask your doctor if he is capable to do the trigger point test to you or not. If you turn out to be positive for that test, then there is a huge chance you have fibro. After that that you might need a sleep test. You really need to find a good rheumatologist, if you decide to see one... then you should REALLY try to find one that is familiar with fibro!

As for the pain in the back of your head... I had that due swollen sinuses! Tomorrow I will see a doctor to get the exact diagnosis... hopefully! I was told it was stress, right! It all started with my neck, by the way!

 

[jacobaiden]

Most of us want to stay in our own home as long as possible. And this does not exclude seniors who have some sickness or weakness and need some level of personal or medical care. Home care services is the best option for this situataions.

 

[1sweed]

Sunnyraven,
Hello and welcome to the forum. I think Katie, covered everything important that needed to be said, and did a fine job of it too. Thank you Katie. I would say be sure to read the sections of the forum that cover the things you are suffering from the most. By reading the older posts, as well as, the new you might pick up some new coping skills and ease some of your worse symptoms.

Feel free to post in all the sections and ask questions or just reply to with answers. We have an area to just vent and also off-topic areas for fun stuff. There is a general section on fibro, as well as, symptoms that seem to plague us all like pain and fatigue. I look forward to getting to know you better by reading your posts.

 

[katydid]

Sunnyraven,
Hello and welcome to the forum. I think Katie, covered everything important that needed to be said, and did a fine job of it too. Thank you Katie. I would say be sure to read the sections of the forum that cover the things you are suffering from the most. By reading the older posts, as well as, the new you might pick up some new coping skills and ease some of your worse symptoms.

Feel free to post in all the sections and ask questions or just reply to with answers. We have an area to just vent and also off-topic areas for fun stuff. There is a general section on fibro, as well as, symptoms that seem to plague us all like pain and fatigue. I look forward to getting to know you better by reading your posts.

Thanks 1sweed! I was on a roll the other night I guess haha I felt bad for writing so much but once I saw how much I had already written I didn't want to get rid of anything because I thought it was all useful lol plus I was sleep deprived, in pain, and trying to tire myself out.... Lol

 

[Sunnyraven]

Ty to everyone for sharing your concern and experience. I went to a GP today, which was $225!, but I came prepared with a list of all my symptoms, but I didn't mention fibromyalgia. He listened to me, then did a physical, which was excruciating when it came to face/neck/shoulders. His top choices are chronic daily headaches, rebound headaches, myofacial syndrome?, or fibromyalgia. He suggested that I stop taking all NSAIDs, which my rheumatologist told me to take for pain, and rx zanaflex and cymbalta (the generic). I felt relieved that I might actually start feeling better. So I went to the pharmacy only to find out cymbalta is $385 without insurance...impossible to pay for. I'm only able to work part time bc of all my symptoms so no health insurance there. I'm not over 65 and I don't have a family so no Medicaid or Medicare. Dont mean to vent but it's really overwhelming and frustrating! Thanks again for listening and I would love any suggestions. I'm applying to Lilly cares now.

 

[snckrs]

I know what its like to not have insurance and fibro. It is hell. We are all here for you Sunnyraven.

 

[Sunnyraven]

And Ty Katie for all your info it really helped me be prepared. And as far as diagnostics, I haven't had any since I lost insurance over a year ago. Bloodwork has always been normal. GP doesn't think it's nec at this point. My diary is detailed at times, vague at others, but interesting (and a little depressing). Here it is...
Headache diary
2/1 7am excruciating, took excedrin and laid back down
2/3 1:30am...mod-sev, took 2 excedrin at 11pm-no help
2/4throbbing, left side mainly, no meds...got really bad tonight
2/5 waking up throughout the night with throbbing, intensifies with any movement...9:30 took 600mg ibuprofen, aching behind my eyes and light sensitivity
11am ibuprofen didn't help, nauseous, ate a few crackers
11:30 took excedrin, lights off and in bed�� didn't sleep
1pm cup of coffee, 1:30 a little better
3pm ate some Peruvian soup
3:30 no headache ��
4:30 ate some leftover Chinese
2/6 8am...slept on and off for 5-6 hours, mild headache (feels like I'm on the verge of a migraine)...drank berry protein shake
Walked Harley-feel pretty good, ate Chinese at 11:30, while walking shamus at 2 - got headache��
3pm took excedrin...
5-6pm nauseous, head throbbing, drank 2 cups of coffee...��
8pm no headache?! Wtf
2/7 restless night, mild headache...11am took excedrin
2/8 rough night, mild-mod headache
3/15 I don't know how much more I can take!
4/7-8, no sleep, fatigued, knees hurting/legs weak, can't move neck. didn't do any exercise-called dr.ning but he's out till Monday. Started taking ibuprofen when I wake and before I go to bed.
4/20-4/25 ; headaches have been bad and every morning; soreness on temples, above eyes and pain at base of head/neck. Trying massage and stretching when I wake up...
4/26 been suffering from headaches almost daily; no energy, acetaminophen, ibuprofen and caffeine only marginally useful at times
Discontinuing minocycline and spiranolactone.
4/27 migraine in am, took excedrin and laid back down for another hour; headache lasted another 45min after getting up
4/28 horrible migraine, pounding with every step/extreme light sensitivity took excedrin and laid back down for another 2 hours; still bad when got up and drank coffee, ate high protein snack and it got much better within an hour; walked Seamus; headache came back in evening-tried acupressure and benjay-little better.
5/1 headaches recurring daily; so fatigued��last night I got another migraine...excedrin, benjay, acupressure, stretching, lights out and prayer! Acupuncture tomorrow-I am hopeful!
5/2 no energy again, pain in feet, knees, butt, upper neck and back plus lower back! WTF acupuncture helped slightly with headache, but not for pain...taking Chinese herbs now
5/3 starting guided meditation and yoga...yoga very difficult even at beginner level...
5/7 another restless night, neck shoulders and lower back really hurt! Knees ached all night
5/12 cancelled work...extreme fatigue and pain. Can't move neck��
5/17 Headaches mild to severe and daily, every morning; one started in the evening after an emotional couple of days so I went to bed early. Very moody��
5/19 cancelled work, severe headache and pain all over...saw dr. Ning and he said I had too many issues and needed a GP...what a waste of $175 I didn't have. I'm so frustrated and without a job and insurance I feel like I'm just going to have to suffer endlessly�� stopped melatonin/started tapered pred
5/20 I finally made it to Susan's at 10:30, rough morning. Lasted for 4 hours then the bottom fell out. At 7 a migraine set in with a vengeance�� tried to sleep but knees aching and legs fidgeting...finally slept from 5-9 thank god.
5/21 OMG! Only mild headache, pain only mild to moderate but still had to take ibuprofen. Still D and abdominal cramps (ave 1-3x/week). Didn't work.
4pm panic/anxiety and severe headache in front... Ugghh...why me?! Tried meditating...just can't stop thinking.
12:50am still severe headache, neck throbbing from behind ears and down, left shoulder throbbing too��
5/22 feel pretty good, mild mild headache, worked with Julie for 2 hours (11-1); at 2pm headache back, 4pm throbbing headache�� 6pm ibuprofen and lights out...ugghh. 8pm ice pack-not better 10:30 my eyes hurt/head killing me/neck stiffening-more ibuprofen

 

[Sunnyraven]

One more question...any suggestions on low cost medications to control pain, migraines, anxiety, etcetera? Thanks again!

 

[1sweed]

Be sure to call your doctor's office and let them know that you can not afford the medication and see if they offer an alternative. Go to the nearest Family Health Center, this is a government run healthcare clinic where through them you can get medications for less. I know they are in the south in Florida and Georgia, South Carolina and North I think. Do a web search to find the one closest to your area. I went to one for many years when I had no insurance. Testing is less too. They go by your income with a sliding scales method that makes everything more affordable. I hope this helps you.

Be sure to find one that has a pharmacy in the building. Usually the bigger cities have at least one that is considered the main clinic for the entire area.

 

[katydid]

Ty to everyone for sharing your concern and experience. I went to a GP today, which was $225!, but I came prepared with a list of all my symptoms, but I didn't mention fibromyalgia. He listened to me, then did a physical, which was excruciating when it came to face/neck/shoulders. His top choices are chronic daily headaches, rebound headaches, myofacial syndrome?, or fibromyalgia. He suggested that I stop taking all NSAIDs, which my rheumatologist told me to take for pain, and rx zanaflex and cymbalta (the generic). I felt relieved that I might actually start feeling better. So I went to the pharmacy only to find out cymbalta is $385 without insurance...impossible to pay for. I'm only able to work part time bc of all my symptoms so no health insurance there. I'm not over 65 and I don't have a family so no Medicaid or Medicare. Dont mean to vent but it's really overwhelming and frustrating! Thanks again for listening and I would love any suggestions. I'm applying to Lilly cares now.

I've heard of people writing to tell drug company/ manufacturer and they some how get free meds... There'sa few ppeople I'vemet at my various Dr's who have done this I guess. What's Lilly cares?
Also, I've seen this in my one Dr's office, there are cards which help discount the meds, I'll pick one up when I go in on the 5th to get the name of it..

 

[katydid]

Btw- the headache diary is interesting. You might want to make it even more detailed tho,
I had to get really detailed and technical when I was trying to figure out my migraine triggers... They had me doing times, how long it lasted, what foods I was eating and times I was eating, they wanted to know the location of the headache, severity on a 1-10 scale and describe the type of pain associated, any meds taken/dosage, frequency and time, sleep pattern, and the weather!
It was insane! I had to get a spiral notebook and used a page a day at least-sometimes 2! Lol
But it might help you to get a little more technical and detailed...
Have you had any MRI's of your spine?
thats good blood work was normal in the past, but things can change...
I'm so glad he gave you a direction and some theories! The myofascial pain syndrome is definitely plausible, I have it as well... I've got a laundry list full of diagnoses lol I hate it, a person in their mid 20s should not feel like they're 100! Lol