[INDENT][/INDENT]I have been a lurker for many years, but now I need some help of my own. Sorry that this is so long
[INDENT][/INDENT]I started having back issues 4 years ago at the age of 18 after a fall off of my green large pony. After a few months, the pain was unbearable and I started physical therapy. I was told my hips were way out of place but should be easily fixed. After 6 months, my hips were still not staying in place and my pain was worse than ever. Over the past 4 years, I have been to two physical therapists, three massage therapists, two chiropractors, and a spinal specialist. Nothing helps for longer than a month or two and then my pain seems to get worse. I have also tried spinal nerve blocks with limited success.
Currently, I’ve been loosely diagnosed with fibromyalgia and given a ton of drugs including pain killers, muscle relaxers, NSAIDS, and Cymbalta for fibro and depression. I’ve been on this regimen for about six months, but my pain remains and is continuing to get worse. Not to mention that I have no energy and doing everyday tasks is extremely difficult. I recently graduated from college and have not been able to get a full time job because of my condition.
My pain has also forced me to get rid of both of my large ponies. While they are both only leased, it is the longest I’ve gone without riding since I was 8 years old. Riding is extremely painful for me and leaves me exhausted.
I would appreciate any advice on how to cope with my pain and the best way to get back to riding or even just being at the barn. Right now just the drive to the barn is exhausting for me 
much less trying to do anything physical like riding or even grooming. Any advice is appreciated!
Have you been tested for lyme and other tick born illnesses? I have a friend who was misdiagnosed with fibro many years ago. By the time she got the proper diagnosis she had had lyme for many years and much damage had been done. If they have not ruled out lyme, be sure to be tested.
So sorry!
Have you seen a rheumatologist? Had an MRI?
I think Fibro is often just a “we don’t know what is going on but want to give you a label” diagnosis.
Consider seeing a pain psychologist. After being on Neurontin, Lyrica and Cymbalta with little pain relief (I began to wonder if the little relief I got was more because the side effects laid me up so much I was doing less than that the drugs were helping), I have opted to wean off Cymbalta, am trying something more experimental but with less side effects, and am trying psychology to help me deal with the pain. Still early stages though.
I also use 10% Diclofenac now, rather than pills for inflammation. Easier on my damaged GI tract.
Consider also a sleep study to see if you are tired because the pain is disrupting your sleep vs something else. Don’t assume that they are all related.
I just got blood work done to test for Lyme’s and am waiting for results.
CHT- I have had x-rays and an MRI but they didn’t show much. Just slight scoliosis. My spine specialist is referring me to a rheumatologist to see if they can help.
I am currently on cymbalta, tramadol, baclofin, and diclofinac (sp). But they do not help much.
I am also going to start going to water therapy to see if that will help. I like the idea of a pain psychologist. I will look into that!
Thank you both!
You may also want to talk to them about THC in pill form for pain relief if your current medicine is not working. I think it gets tricky when they start mixing and matching medications without really knowing what they are trying to fix!
I would also keep a “pain diary” to track when you feel better vs worse. What you are doing, how you feel mentally, what you are eating and maybe even things such as how you slept or the weather. A psychologist will have you do this likely anyway, but it might help you discover triggers or patterns in your pain.
Honestly, what you’re describing sounds more like Lyme than Fibro (I have Fibro). Granted, Fibro presents differently in every individual, but there are some other fairly major and common Fibro symptoms that you don’t mention.
A Fibro diagnosis also generally involves pain in a number of particular “pain points” throughout the body - these points are specific, and there’s a way that your doctor can test you for pain/sensitivity in those points. Did the doctor who tentatively diagnosed you perform a test like that?
Yes I have the majority of all the pain points. But as my symptoms have progressed, I agree that they are more similar to Lyme’s.
Does anyone know how much damage can be done if Lyme’s is left untreated or mistreated for about 4 years?
I should have my test results back by Thursday to know if its Lyme’s or not
[QUOTE=Formal Attire;7748485]
Yes I have the majority of all the pain points. But as my symptoms have progressed, I agree that they are more similar to Lyme’s.
Does anyone know how much damage can be done if Lyme’s is left untreated or mistreated for about 4 years?
I should have my test results back by Thursday to know if its Lyme’s or not[/QUOTE]
Sometimes Lyme test is a false negative or false positive. My Doctor just went ahead and treated me…doxy for a couple months. We used my symptoms to tell us if it helped, which it did, somewhat.
One extremely important thing with dealing with Fibro…SLEEP…Good Sleep. Ambien and those sleep aids do not give you the quality sleep you need. Again, my doctor prescribed Doxepin 10 mg…can take more if needed. The quality sleep I get has helped me a lot. It is an old antidepressant that never works well for depression, but does give you quality REM sleep which is lacking in Fibro people.
I wish I had a quick answer for you, but I don’t.
If you need to talk I can explain all I have been through these past 15+ years of fibro and maybe help you get on e right track…just let me know. Be happy to share.
Thank you! That’s very helpful! Especially about sleep. I hardly sleep anymore and I know I don’t sleep soundly. I will look into the Doxepin.
My spine specialist basically told me on Friday that he has no idea what’s wrong with me and doesn’t feel like figuring it out. He’d rather just send me to someone else… So I will have to wait till I get an appointment with my new doctor.
I have pain in my left hip for going on 7 years. It has come and gone for a long time, but the last few years it has stayed. I went to the doctor and we did the MRI on my spine and found nothing.
I followed through with another doctor and did a contrast CT scan on my hip and found some severe inflammation in the SI joint of my hip.
I didn’t want to rush right into getting an injection as that is short term and I have found in the past that steroids don’t help. I was prescribed cymbalta and neurotin/gabapentin. This has helped me sleep and get through the day.
It might be something to try.
[QUOTE=Formal Attire;7749530]
Thank you! That’s very helpful! Especially about sleep. I hardly sleep anymore and I know I don’t sleep soundly. I will look into the Doxepin.
My spine specialist basically told me on Friday that he has no idea what’s wrong with me and doesn’t feel like figuring it out. He’d rather just send me to someone else… So I will have to wait till I get an appointment with my new doctor.[/QUOTE]
What a Crappy Doctor!! So sorry you are going through this. Fibro is a tricky one to treat……I am fortunate I have 2 doctors who are really up on treatments. Where are you located? Perhaps I can ask my doctor if he knows of anyone in your area that may be of some help. Feel free to post here or PM me where you live and I can ask him.
No sleep or bad quality sleep affects Fibro more than anything else I know. Add that to changes in the barometer and I can become a mess. One needs a Doctor who is very up on meds.
Believe it or not the doctor I see is a psychiatrist who is also a member of ILADS…“lyme disease org.” he treats chronic pain along with depression and Lyme. Has written many papers and has been the best help I have found in 15 yrs!
Finding the right combo of meds is trial and error, but when you hit it your quality
of life will improve and you will learn how to deal. Do I still have some pretty bad days? Yes, but I can deal knowing it won’t last!
Mental attitude also plays a big role in pushing past the pain.I know thats a hard one, but I am here if you want to learn more.
I just want to chime in a little. I also have Fibro, and by the sounds of your description, you probably don’t (I mean no offense, you sound worse than my pain! Mine is more all over mild pain all the time, with slight acute pain. You sound more acute severe pain in localized spots rather than everywhere?). Lyme is also my guess!
However, you mention slight scoliosis? When I had scoliosis as a child it was extraordinarily painful, I stopped biking, I couldn’t even stand to go grocery shopping. I was miserable. They said it was only a slight curve, however as I aged it went above 50 degrees of a curve and I opted for surgery.
Since then, I’ve been fine back pain wise, some off days, but overall much better.
Have you looked more into it? When you fell you could have tweaked something. 
Also I second the person who says your doctor sucks!! Sounds like he just wants rid of you. 
That is unprofessional and callous, I’d be on the search for a much better opinion.
Thank you all for the advice! I now have lot’s of different things to bring up with my doctor. I have been recommended a good general practitioner by a friend and am hoping to get an appointment with them this week. Especially since I had to go to the ER last night due to excruciating pain (of course they weren’t helpful. Said that’s not the kind of thing the ER treats… )
I will update if my blood results show anything!
Partotnutz- I am in south-west Virginia (Staunton/harrisonburg/Charlottesville area)
[QUOTE=Formal Attire;7751204]
Thank you all for the advice! I now have lot’s of different things to bring up with my doctor. I have been recommended a good general practitioner by a friend and am hoping to get an appointment with them this week. Especially since I had to go to the ER last night due to excruciating pain (of course they weren’t helpful. Said that’s not the kind of thing the ER treats… )
I will update if my blood results show anything!
Partotnutz- I am in south-west Virginia (Staunton/harrisonburg/Charlottesville area)[/QUOTE]
I will email my doctor and ask for any recommendations he may have in your area.
You need blood work to rule out all rheumatoid diseases, all tick born disease, etc. Thats where my doctors started.
Fibro flares its ugly head in many ways, some people like Trinket, some far more painful. Tick borne disease……you need a real specialist to rule them all out as I do know a young girl in her 20’s that was incapacitated with pain and she did have one of the rare tick born diseases that took a specialist to find and treat.
http://ilads.org/ilads_media/physician-referral/
my Doctor said to fill out the info and they will refer you to someone in your area
Thank you so much! I will definitely fill it out!
I got my blood work back today and everything came back negative (Lyme’s and rheumatological tests) except I had elevated levels of ANA.
I have an appointment on Thursday with a rheumatologist. So I’m assuming they will be doing additional tests to find out why the levels are elevated.
Before your Rheum appointment make a list of any symptoms you have even if they seem unrelated. I made the big mistake of not mentioning my acid reflux issues as they were the list of my concerns… this turned out to be one of my most serious issues, and was crucial to getting close to a diagnosis as unrelated as it seemed. I think I just felt like a hypochondriac with all my symptoms and didn’t want to add to the list!
Also, check out Inspire.com GREAT support group/forum for health issues/auto-immune disorders. (I am CHT in the Scleroderma group)
Wanted to update on my results. Unfortunately its really nothing new :no:
My blood work came back with high levels of ANA and high monocytes- absolute. Rheumatologist says that this can be a sign of Lupus. But I don’t have enough signs to diagnose it fully. He is going to start me on medication for it and see how it does. BUT he said it will not help with my pain…
The pain is my main concern/issue, so I’d really rather have a fix for that. I got decent relief by going on steroids last week, but obviously I can’t live on them.
Any suggestions?
Found a link you might find interesting on Pain & Psychology.
Also, you might want to talk to your doctor about trying Alpha Lipoic Acid.
I started it 3 weeks ago, and although it hasn’t helped with pain, I can actually make something resembling a fist for the first time in 2 years! It helps with Scleroderma by reducing collagen production, but also with other ailments by cleaning up free radicals and damaged cells. And it’s cheap.
CHT- thank you! I really enjoyed that article and I believe that my next step will be trying to find a pain psychologist in my area!
I will also be sure to look into the Alpha Lipoic Acid!
Thank you for all your help! I really appreciate it 
