HELP! Huge Increase in Pain. Don't know what to do?

Support
1

Hi fellow Fibrists (?)

I'm having a problem I really need some feedback, suggestions, commiseration...just some help! I feel like I can't live with this much longer...it's no life to live.

For at least a year, I have cut down on pain medication. I have taken very little, maybe a total of 2- 800 mg ibuprophen and maybe 3 oxy 15's during a given month (broken into smaller doses). At most. I have been cleaning up my diet and simply listening to my body and resting when I need it. Sometimes I can be out and about all day, or a 1/2 hour. I listen to the cues.

About 3 months ago I was put on a course of steroids for an ear infection. So weird...I felt GOOD...happy....energized...my brain fog cleared out and I was making plans and getting things done. most of all NO PAIN.....ANYwhere. I've taken steroids before and never had this effect. Sadly, you can't be on them forever :( However, I proceeded to feel better regularly. Maybe not as great as while on the steroids, but much better.

Then about a month ago I was hit with unbearable pain. It literally woke me up thru the night, through my sleep meds not insomnia--pain--it was head to foot, so many different spots I would have to say everywhere. Day after day, night after night. My pain meds do not touch it. I feel like I am suddenly worsening at a very fast rate and I'm scared. I've had FM since 1999 and I've never experienced this fast intense worsening. I told my doctor & he was dismissive until I asked about "breakthrough" medication. Then he thought I was fishing for drugs.

Like I said, I feel like I can't live with this much longer...it's no life to live. Something is worse and I have no explanation for it and no recourse. I was with a fellow fibro sufferer at Easter and had bad pain then an acute attack, and even SHE was at a loss. She looked a little scared actually, and I was embarrassed. I think it scared her kid :(

Concurrent problems I have are lumbar & cervical stenosis, herniated discs, chronic fatigue, arthritis, tmd. major depressive disorder (which is being well treated), apnea and I'm quite over weight...unfortunately at age 55 and unable to move much, nothing I try seems to work, so high blood pressure too.

I would really to hear from people-

Thanks in advance

Liz

2

HI Liz

your story and mine have many similarities sadly to say.. i have a few more things on my list. I found a good neurologist i like who is dealing with my neuro issues( seiuzures for one ) and pain issues. Been trying lots of different meds and i am also trying to stay away from narcotics as much as possibe., it would be good if i got some good relief from them once in a while but they dont even help me much.. The massage( manual and ultrasound ) are very soothing so i just started going back to pt for them. I also have a very good medical doc . The good thing about these docs is that they believe me which makes it better for me as far as hope and faith that something , someone will have that magic that will work for me. i wish the same for you and send you all the best for your well being

HUGGGGGGGGGGGGGGGGGGGGGGGGGGGS

suzie

Ps i know that the steroids help and as you said they can only be used short term, sigh..

anyway keep on keeping on to find releif and good people to help you do that

3

TENS/EMS Unit, I bought mine AFTER the Holidays & purchased one for $27. I have family members who want me to find them one $50 or less, I chose for the 4' lead wires & I suggest that you purchase at least 4 extra electrodes & get yourself a 9V battery charger & two recharge 9V batts. It does come with a AC adapter w/a 4' long cord.

If you are in intense pain & it is during your MD's office hours have someone drive you to the MD & help you in & wait to take you home. You are in an emergency visit & your MD will think to himself "Oh BLEEP" & he will order you a shot & rethink what he can do for you. Also if it is not during office hours do go to the Hospital, he will get the Hospital notes on the next business day.

You have been going thru this a lot longer than I, if I think of anything else I'll come back here. M

4

Hi Liz,

I am sorry you are in so much pain. Has your doctor tested for any possible infections or other things going on? I have had recurrent, undetected UTI's for a long time and when I had one and didn't know it, it caused the worst pain I have ever experienced in my life with this diagnosis. It went on for over 2 months. Do they have pain clinics that you can be referred to by your primary care doctor? They specialize specifically in pain management.

I understand what you are going through. I have also dealt with excruciating, unbearable pain and thought life was miserable and had little hope. I was depressed and still battle depression to this day. I don't have much advice to offer, but I want you to know that you aren't alone and you have support *hugs*.

One thing that helps me is hot baths. I'm talking hotter than most people can even begin to tolerate and it really helps me focus on nothing but the hot, soothing water. My pain is very minimal for the few moments I am in that hot water and relaxing. Do hot baths help you? I also use Lavender scented Epsom salts too in the bath water and it helps with inflammation.

Hope you feel better soon,

Sara

5

Hello Liz,

Sorry to hear bout your problems, and what good advice you have had already on here. Obviously keep in touch with your Doc, cos it may be your other conditions need meds. I am on here to wish you well, and say you are in my thoughts.

Take care, Anne

6

Thank you all so much! Another person recommended a TENS unit so I will look for one and try it if I can afford it.

I don't take baths bc getting in and out is difficult for me, but I read not long ago the epsom salts are soothing and also are used for detox, which sounds like a good thing.

Only once did I go to a pain management doctor and it was a very bad experience for me. They just treated me and probably everyone?, with suspicion and the whole time harped on meds and signing this or that and finally kicked me out bc I hadn't been in for 3 months bc I went out of state (where I came from) to help a relative with cancer, and while I was out there I ran out of meds so I went to my old doctor (woi is a WONDERFUL doc) for a refill--mind you this added up to 1 refill in 3 months. It was just so stressful I never wanted to go back to one! I don't know if they are all like that, but I hear a lot of that from other people as well.

A neurologist might be a good idea. I will have to change my insurance to do that, but maybe worth the hassle. I would really like more than JUST pain management, I also want to know what is creating the pain, do I have a new condition or have all my other one's just gotten worse?

7

Hi Liz,

Wow, you really do need some immediate help! Have you been seen by a rheumatologist and tested for lyme disease, lupus, rheumatoid arthritis, etc.? If not, I would recommend that being your first stop as a rheumy can test you for many different illnesses that oftentimes go along with fibro. A friend of mine has a rheumatologist who thinks that fibro is simply the pain that goes along with another (sometimes undiagnosed) disease.

Also, if you are a person who has double joints - that is, joints that can come out of joint easily, or skin that is way stretchier than other people's you might have Ehlers Danlos Syndrome. That can be extremely painful.

I do have to say that if I don't take my daily dose of Lyrica and Effexor then I feel just as you do. So, in other words, maybe you don't have proper pain medicine. Again, I think a rheumatologist could help you with that.

Please let us know how you're feeling! I hope you get the proper pain relief, although don't expect 100 % pain relief.

Hugggggggggs!