anyone out there with auto-immune/chronic pain issues before dx?
Comments
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Oh I forgot, I had a bit of a car smash ( NOT my fault!) a while ago, like 20 years, that caused no end of problems ...cervical spondylosis mainly. All one side was quite affected , my neck, RHS ribs, arm, hip and right down to my toes...AGAIN something you couldn't SEE...and again got the disbelieving treatment from my GP. Even when I got a 'label' put on the condition by a specialist, my GP actually wrote, in her notes, (which I asked my solicitor to request, he could make the request formally, I couldn't ) that she thought 'there was a psyche element in all this somewhere'. I could have murdered her when I saw that, as NO WAY can I have it taken from my record, it's there forever, and could have a bearing on how other doctors treat me. I think if I'd just sat down and put up with all the pain, and not asked for referrals to various specialists to try and get to the bottom of all the pain I was in, she would never have written this. Only good thing about that Dr is that she has retired now.
I know the above isn't an autoimmune disease, but it WAS , and still can be to some extent, a chronic pain issue.
Isabella.
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Isabella- There are some theories out there that feel that FM is brought on by a trauma of some kind. I was also in a bad car accident 20+ years ago though not as much injury as you had. And my FM symptoms started a few years later.
I can understand your anger at your old GP to write that in her notes! I would have been murderous, too! It's infuriating enough to be discounted but to try to label us as mentally ill just adds fuel to the fire. I think I read somewhere that women are less likely to be treated for pain syndromes which is ironic since we have withstand much more pain than men. They should realize that by the time we're complaining about it, and seeking treatment for it, we're in pain that would bring a man to his knees yet we continue to try and function.
We definitely have to be our own advocates in all things auto-immune, unfortunately, Good for you for trying to figure it out.
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I found this article from ABC News- "Women's Chronic Pain Misdiagnosed, Undertreated, Dismissed"-
http://abcnews.go.com/Health/PainNews/women-chronic-pain/story?id=15598143#.T8-DDhzrTlt
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Interesting article Kate. Of course if women are living with undiagnosed cronic pain then of course they will get depressed! But somehow it is easier for them to give anti-depressents and ignore the complaints of pain. How can that be? I also agree most of the men I have ever know are such wimps about pain and I know I have a high tolerance so when I'm in pain it really is bad but you can't tell that to most doctors. I don't know.... I've also have issues from the car accident I had in Feb. but most doctors just want to dismiss it since I have MS. They immediately see that on the forms and think oh shoot I know nothing about this so whatever her problem is she needs to see someone else. I go to my neurologist his answer is everything is MS - nope nothing you can do about! ugh!
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Stanzie- I'm sorry you're still having pain from the accident. I know it's frustrating when you're already dealing with a medical issue that causes pain. Sometimes I feel like if one more thing gets added that causes pain (like my LE) it's going to push me over the edge. I've been complaining to my doctors for a decade about my pain but no one seems to get how bad it is. I think they look at you and you've managed to style your hair, put some lipstick on, sit upright in a chair and carry on a conversation and so they think, "Well, she seems to be coping o.k." (Maybe if I crawled in, unwashed and unkempt, sobbing hysterically they'd take me seriously?) I don't think anyone can understand chronic pain until they've lived it.
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hi Eema: i have had ms for over 25 yrs now, and im in pretty much the same boat as you.. lots of allergies, and that includes MOST bc drugs.. i came down with chemo induced hypo thyroid, last year, and of course, im allergic to the synthyroid i HAVE to take.. we're just hoping the nubers will go down enough, and it 'll resolve itself..
i understand about the epi pen. one in my purse, one in the garden, and one by the dinner table, so i sure "get it" it's a giant PIA: but it becomes something you just HAVE to be careful with. this dec; i had a bad dysphagia incident, and almost choked to death.. i've been really aware of eating and swallowing, since.........good luck.. life is hard work these days......3jays
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Just found this article that says fibromyalgia is not considered an auto-immune disease which I thought at one time it was. I remember my GP telling me years ago that fibro really should be treated by a neurologist not a rheumatologist as it's a brain disorder. The brain is sending false pain signals. I asked my DH's neurologist (he has Parkinson's) if he knew anything about it. He's a movement disorder specialist, so doesn't treat fibro, but said he heard some doctors are having success treating fibro with Mirapex which is a Parkinson's med that I believe improves dopamine levels. WebMD said Mirapex can be prescribed for disorders characterized by stiff, tender and painful muscles. That sure sounds like fibro. (Word of caution, though, Mirapex has been shown to increase compulsive behaviors such as excessive shopping, spending, gambling, etc.)
He also said some doctors are prescribing Adderall for fibro which is a med for ADHD. Has anyone tried this or something similar?
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I tried the Adderal years ago. Nothing. And Kate is right, an accident, trauma, or illness can set off the FM issues! FM was not acknowledged by the medical profession until 1992. Before that it was all CFS.
I am now on Morphine Sulphate with 5 mgs of morphine to add through the day for break-through pain. I am STILL in pain!!! My spinal stenosis is either getting REALLY bad, or I've developed something else...sigh. Waiting for an MRI.
I got SO desperate one year, this is hard to admit but I trust you gals, that I cut myself. The concept to me at the time was to have control over a pain that was worse than what I was feeling. My arm was a MESS!!! I wasn't trying to commit suicide, I was trying to control the amount of pain I was feeling by ME being the source of the pain. You know what I mean? I took a butcher knife and slashed the fatty part of my lower left arm. Didn't need stitches, but have bad scars. When my doc saw that, he finally believed how bad I was. He also wanted me to get a psych consult which I did, that confirmed my only issue is pain! That's why he will prescribe the heavy narcotics for me, knowing that I've been able to get off them 3 times over the past 6-7 years. I'm almost at the max that I can walk around with, though, so getting nervous wondering what's next.
Must call the hospital to see if they have the MRI request yet....
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Oh Barb! How horrible that the doctors didn't believe the amount of pain you were experiencing. I'm so sorry! I have had some pretty bad pain in the past - but nothing like you must have been having. However, I do understand trying to do anything to make the pain go away or make the pain better... I'm glad you at least got their attention which is what you needed to do. I 'm sorry I can't imagine such pain.
Kate my neurologist recently put me on Adderall - it has helped with fatigue for me. I can tell a difference. When I was taking Estrogen then the provigile worked fine but once I got BC and had to stop the estrogen then provigile did nothing. Just going downstairs was so hard and having 3 teenagers and being a single parent that wasn't working. So - it isn't quite as helpful as the Estrogen was but it definately helps. The problem is that it is so over prescribed and kids are selling it and such that it can be hard to get the prescription filled sometimes. Also you have to have the prescription mailed - they can't call it in. This still doesn't make sense to me but that is the way it works.
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Stanzie- Does the Adderall just help with fatigue then or does it help with pain, too? Do you have any issues with insomnia on it? I am finally able to sleep through the night without meds (though the hot flashes are killing me!) so don't want to mess that up. I have done Provigil in the past with some success but it was ridiculously expensive. Now I see it is generic. I think I'm going to have to ask my doctor about either one of those. She's still working on my thyroid meds, though, so may not want to introduce anything new right now.
barbe- I definitely don't have the level of pain you've been experiencing but I understand the desperation when no one will take your pain seriously.
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Barbe: i'm so sorry you had to revert to the cutting.. be very careful to have another answer for yourself.. its an addictive behavior, and can get way out of control. i wonder if one of your meds is backfiring on yo??
i have a friend who's addictive in her cutting/hurting herself.. so, i know, its like bulemia; or such.. i was a "head banger" since i was a kid. so, i DO know what you're experiencing.. i went to therapy, and found smashing dishes relieves the urges to bang my head.. its based in ME being the problem, as you said.. what else?? the problems always me, my mind, if i look hard enough.. take care of yourselves, ladies...so far, i've tried symmentyrl, and providgil with no help for the ftigue.. i'll be interested to hear what stanzie has to say about adderall aND SLEEEP, cause i can't sleep, even WITH meds, till dawn rises... 3jays
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Thanks for letting me tell you ladies, I've never told anyone. 3jays, it was a one-time incident that I have dealt with through therapy. I am not "inclined" to hurt myself it was decided, and it was just as I said - to try to be the one in control of my pain. I thought it was a cry for attention, but the doc said if that was the case, i would have gone for my wrists and not the fatty part of my arm! Doi on me!! I know at the time I wasn't thinking about 'cutting my wrists' but about being in control of the pain.
Kate, don't know if I've mentioned it here, but worth a repeat; sleep on a towel, head to foot, which means a separate towel for your pillow. You will sleep through your sweats, I promise! And, if you can, sleep in the nude on the towels as our pretty night gowns often have polyester in them to make them silky and that is just way too hot!! Also, I'd wait until they balance your thyroid meds before adding more, you're right! And, you may find that balancing the thyroid may help other issues. I am off all my anxiety meds except 60 mgs of Cymbalta, it's the lowest med level I've been in about 30 years and I'm fine!!! I had my thyroid meds adjusted 3 times so far and am due for another blood test. That shows how much time it takes to adjust as I've been doing this since Feb 7th when the last of my thyroid was taken out. Makes me wonder; instead of docs labeling us hysterical, maybe they should check our thyroid levels!!! I hadn't wanted to say anything in case it was a fluke and also because poor 3jays isn't able to enjoy the full benefit of the medication....sorry 3jays!
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Thanks for the tips, barbe!
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Just read this study about a link between fibro and dietary glutamate (MSG) and aspartate. I just recently read about all the products that have MSG in them and the different names MSG is called on labeling. Might be worth trying to avoid MSG and see if there's an improvement in fibro symptoms.
http://www.prohealth.com/library/showarticle.cfm?libid=17091
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Kate, I've already been avoiding MSG due to migraines. That's been for over 30 years, so it hasn't made a difference to my FM. Also, I can taste an artificial sweetener even in a stick of gum and avoid them like the plague and always have. No soda, either.
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Sorry all for missing checking this thread. About the Adderall. No it doesn't affect my sleep but I do take it first thing in the morning- I'm on the lowest dose 10 mg. It helps me very similar to provigile but it makes more difference with fatigue. It is a pain as the Doc can't prescribe more than a month and they have to mail you the prescription but it does help. When I am waiting for prescription(one time nurse didn't mail it when she said she did) I tried nothing and I barely made it around the room. I went back and tried the provigile and it helped but not as much as Adderall. No it doesn't do anything for pain just fatigue and helps to wake up your brain. Hope that helps....
Just saw a bit of that Doctor's show and how my gosh diet sodas with aspartame are really scary! Avoid those!
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Just read about Lifescript, a women's health and wellness website, which has launched a new fibromyalgia health center online. Might be worth checking out-
Put in fibromyalgia in the search box and look for the fibro health center.
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Just posted information on MS and BC thread. dont' know how to copy and paste and do not know anything about the Doctor or his center. A friend gave me this artical on LDN - low dose naltrexone and how it is helping people with auto-immune diseases, rheuatiod arthritis, fribromyalgia, chronic fatigue,hepatitis C, Parkinson's, allergies, cold sores and some types of cancer.
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Interesting about the naltrexone. I googled it and seems there have been several studies about it for fibro pain. It seemed to work so I wonder why I haven't heard more about it. Must be generic so drug companies won't make any money on it and doctors don't push it. I may have to ask my GP about it next time I see her. She's pretty open to trying new things. Thanks, Stanzie!
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Here's some links to some of the studies. (Can someone tell me if my links work or not?)
http://www.painmed.org/2012posters/abstract-251/
http://www.webmd.com/fibromyalgia/news/20090417/naltrexone-may-ease-fibromyalgia-symptoms
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Hmm, went to Wikipedia for the drug and this may be why it's not grossly prescribed!!:
Naltrexone is an opioid receptor antagonist used primarily in the management of alcohol dependence and opioid dependence. It is marketed in generic form as its hydrochloride salt, naltrexone hydrochloride, and marketed under the trade names Revia and Depade. In some countries including the United States, a once-monthly extended-release injectable formulation is marketed under the trade name Vivitrol. Also in the US, Methylnaltrexone Bromide, a closely related drug, is marketed as Relistor, for the treatment of opioid induced constipation.
And Kate, a drug gets it's first 25 years (?) "alone" in the industry before it can be made in the generic form. That's to help pay back R&D.
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Only your last link worked for me and just took me to "webmd Any Questions?"
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Darn! I don't know why my links aren't working! You're right, barbe, naltrexone is used for alcohol and drug dependence but for MS and fibro it is given at a much, much lower dose.
Here's what the webmd site said about it for fibro-
Preliminary Study Shows That Low-Dose Naltrexone May Be an Effective, Low-Cost Treatment for Fibromyalgia
By Miranda Hitti
WebMD Health News
Reviewed by Louise Chang, MD
April 17, 2009 -- An inexpensive drug called naltrexone may make a good treatment for fibromyalgia, report researchers at Stanford University.
Naltrexone isn't a new drug; it's been around for more than 30 years and is used to treat opioid addiction.
Stanford's Jarred Younger, PhD, and Sean Mackey, MD, PhD, tested a low dose of naltrexone as a fibromyalgia treatment in 10 women who had had fibromyalgia for about 10 years, on average.
First, the women spent two weeks recording the severity of their fibromyalgia symptoms every day using a handheld computer. And they took lab tests to gauge their fibromyalgia pain and sensitivity to heat and cold.
After that, the women took a placebo pill every day for two weeks, but they didn't know it was a placebo pill. At the end of the placebo period, the women took a naltrexone pill once a day for eight weeks. Finally, they spent the last two weeks of the study not taking naltrexone or the placebo.
All along, the women continued to rate their fibromyalgia symptoms every day, and they repeated their lab tests every two weeks.
While taking the placebo, the women reported a 2.3% drop in the severity of their fibromyalgia symptoms, compared to their symptom ratings at the start of the study.
When they switched from the placebo to naltrexone, they reported an additional 30% drop in their fibromyalgia symptom severity.
The women also showed greater tolerance for pain and for hot (but not cold) temperatures while taking naltrexone.
Most of the women -- six out of 10 -- responded to naltrexone.
Side effects were mild and brief.
Two women reported having more vivid dreams during the study, and one woman reported transient nausea and insomnia during the first few nights of taking the pills, note Younger and Mackey.
The study, which appears online in Pain Medicine, was a small, preliminary project to see if low-dose naltrexone showed promise. It did, so Younger and Mackey are already working on a new study that will test low-dose naltrexone in 30 fibromyalgia patients for 16 weeks.
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Did you guys read my info on the other thread - yes Barb that is what it is normally prescribed for but this is a low dose protocol.... However I'm not advocating it just trying to put out some information I got from a friend who goes to this Dr. Whitaker and she passed it on to me. Some of it makes sense as it would help restore the body's balance after drug use and such but on a low dose I could see where it might bring the immune system back in check.... don't really know as this is all news to me as well! But interesting and might be worth asking your own Doc's about it.....
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On the other thread I posted pretty much the whole article.
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VERY interesting, except for the fact that I'm on HUGE does of narcotics every day for my spinal stenosis!! hehehehehehhee I take 80 mgs of morphine normally, and 5mgs when needed for break-through pain. This would totally screw me up!
I like the fact that they're still trying to find the magic bullet. I'm always hoping that something in all the drugs I take will help. I was hoping Vitamin D3 would be the ticket, but sadly, no. I'll keep trying anything. I'm not in a flare right now, this exact second, so I'm not as desperate. But once I get bedridden, I lie there and think of the wierdest things. I've even tried black licorice as it has so many medicinal qualities!
Keep the posts coming. One day something will click with us.
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Barb- I did think about you and all your pain meds! Sorry! Unless something really works and you get to lose all the pain meds! We can always hope!
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There is a surgery they could do on my back. I just had another MRI so if my stenosis has moved from moderate to severe, they might do it. My neighbour (78) is getting hers done this October. I don't want to wait another 24 years of agony!! Perhaps now that I'm off on disability the surgeon will reconsider it either way. For cripes sake! To know it could be fixed just kills me.....sigh. Of course the FM magnifies the pain beyond what a 'normal' person would be feeling and some docs don't understand this. Thank God my PCP understands I need the big boy meds.
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Oh Barb! I cannot imagine how much pain.... And back pain is one of the worst as it hits you in so many ways not just your back! Could having the back surgery reduce the Fibro or would it not work that way? Don't want you to be upgraded to severe just hope you can get some real help!
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I just got diagnosed with fibromyalgia today; so much to learn about it. Where to begin?
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