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Old 01-14-2011, 03:16 AM   #1
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I'm miserable..

My hip & legs are really flaring up. Both my lungs hurt. Would it help relieve pain if I start stretching daily? Does bengay work? I'm a month and half before I see my doctor again ((((. I also hurt a muscle in my back about 2 weeks ago laying on a mattress that had springs in it. Just once, that is all it took. I usually use a foam mattress, but I got mad and went into another room and slept. The muscle problem is radiating pain in my neck & jaws. I'm taking aspirin even though it made me vomit blood but I take it anyways in hope it'll work, then it doesn't, and I'm just left sick at my stomach (yes I'm dumb as ....). I wanted to go to the hospital yesterday but they don't like dealing with chronic pain so I soaked in the bathtub, that really didn't help. And the mouth sores (inner blisters) are constant, especially under my tounge, makes my throat feel like it's burning all the time, and like I have an ear infection. The blisters on my outer lip doesn't break out anymore where I take plaquenil but I can't get rid of these canker sores. I hate to call my doctor. How do you guys do going to your main physician? He makes me appts every 3 months, and I usually can never take it that long, and schedule an appt in between that. I was just there a few weeks back over my bladder problems. I can't even imagine making another appt. I could have already went back for vomitting blood, getting dehyrated, the muscle pain, the back sprain, see why I make myself suffer it out sometimes? But I think I need appts monthly, this 3 mth wait with all these stupid problems I keep getting, doesn't work. I seriously hate being so pesty though. Everytime I have to ask for help, I'm mad at myself for being such a crybaby.

Last edited by neveragain444; 01-14-2011 at 11:02 AM.

 
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Old 01-14-2011, 03:48 PM   #2
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Re: I'm miserable..

I forgot we have a health clinic here. They gave me some Lortab (thank god).. ))) I am feeling better from just one pill.

 
Old 01-14-2011, 07:15 PM   #3
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Re: I'm miserable..

I was doing okay until the lortab flared up my stomach pain. Now my back is hurting again (I've been screeming crying) I sware I just want to shoot myself. I can't take another Lortab because of my belly pain. I put a cold ice pack on my back and my entire upper back has went numb and is really tight. It made the pain worse. Is that normal? I have never had that happen to me before.

 
Old 01-14-2011, 10:05 PM   #4
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Re: I'm miserable..

I don't have Lupus, but my doctor is monitoring me for it with regular blood tests. My ANA has been at 1:640 and I have some beginning signs of it. I have a lot to learn about it yet.

That said, while I can't speak to most of your symptoms, I was wondering if you have ever tried BioFreeze for your back strain. I've found it to be the most helpful thing for muscle pain. I have tons of trigger point problems and myofacial pain. It can be found at many medical supply places, PT offices, chiro's, the internet and pharmacies. It comes in a gel, spray and roll-on forms so you can try whatever form you prefer.

Does use of a TENS help at all?
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Old 01-14-2011, 10:30 PM   #5
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Re: I'm miserable..

Mine is 1:640 now. That's too high to dismiss. Maybe you don't have lupus but how do you not have an autoimmune disease? That is the range they will accept for a diagnosis of AI disease. Are any antigens (autoantibodies) testing positive? It was 13 years before my RNP antibodies showed up on blood work, didn't change the fact of how sick this made me. Mine started out 1:320 homogenous, with nothing else to confirm it. If you can start treatment early, you might be able to pass all that torment to come. No I haven't tried biofreeze, do you not need a prescription for it? I have tried tens on my back, wasn't too happy with the results. My physical therapist was great though. I loved how he took restricted areas in my back and released pressure. That always helped.

 
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Old 01-15-2011, 01:20 PM   #6
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Re: I'm miserable..

You don't need a prescription for BioFreeze. Like I said, it is used by a lot of PT's and chiros and most medical supply places I've been to now carry it. I go to one of those good neighbor pharmacies and they carry it also. I've also seen it at one of those ergonomic back stores and all over the internet. It is head and shoulders better than any of the other icy-hot type things I've tried. Might be worth checking into. Probably couldn't hurt.

There is a good Trigger Point Workbook by Clair Davies that I try on my own. I use it with a theracane to reach some of my back and shoulder points. It helps, but isn't the same as when a trained professional works on you.

I suspect something autoimmune, but my docs haven't said much. My ANA came back homogenous in October and homogeneous & speckled the second time it was tested 6 weeks later. I go back for more testing later this month. I also came back with a positive serum ACE. It was 358 in October and "above the clinical reportable range for this analyte" in November (reference range 5-60). My cardiolipin IGM was high in the first test, but more normal on the second. My RDW and platelets have remained high and the eGFT is kind of low. Other than borderline low B12, everything is coming back within normal range. My tests were first done by a new Neurologist. He referred me back to my PCP and Pulmonologist. Both of them just said to wait and see. I'd never had these tests before. My docs don't appear particularly concerned. I don't really know what to make of it. I go back to my Neuro for a follow-up in Feb, but he basically released me from his care on my last visit. My March Pulm. visit is just a regular monitoring visit for PFT's and x-ray because of my asthma--I had a negative chest CT last Sept.--ironically a clinic doc was checking for Sarcoidosis due to a lingering cough that was later confirmed as just LPR. I've had 4 brain MRI''s and one cervical. They showed a few spots, but they were unchanged between sept and nov. so the neuro thinks they are old.
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Last edited by MountainReader; 01-15-2011 at 01:29 PM.

 
Old 01-17-2011, 05:17 AM   #7
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Re: I'm miserable..

Thanks, I will definetly give that a try. I really don't know about your docs. They should not be overlooking AI disease, or play a wait and see game, for what, to see if you get organ failure? Do you have fatigue & muscle or joint pain? If you do, don't let them drop the issue, your ANA is too high. I think the ANA patterns just come from the type of lighting a doctor uses. My last patterns were 1:640 homogeneous & 1:640 Nucleolar, I have an RNP of 7.3, it should have showed a speckled pattern instead. I'm lucky, no severe organ damage, but the effects this disease took on me all these years without treatment, the pain & fatigue, I don't know if my body will ever recover. If you have symptoms, you could use plaquenil and see if it affects your ANA at a later time, if it lowers your ANA, that says it all. It's hard to get the diagnosis, I went 14 yrs. I don't know anything about the type of blood work your describing there, but I'm thinking OMG, when your stating they don't appear concerned. Did they give you any reason why the blood work is abnormal?

 
Old 01-17-2011, 09:33 PM   #8
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Re: I'm miserable..

I'm sorry to hear it took you so many years to get your diagnosis. It is frustrating not to know exactly what is going on. They just pass you from specialist to specialist.

I forgot to ask in my previous posts. Have you tried seeing an Upper Cervical Care Chiropractor? They do gentle manipulations to help with neck and body alignments--no cracking here. My TMJ specialist highly recommends that as part of my treatment to help my neck and jaw muscles. They have a national association to help you find a certified doc. Your jaw and neck are connected to your hips through body alignment. By working to get things back in alignment, it should help some with the muscle spasma, thus helping your lower back and hips some.

It seems most primary care visits have to be about one specific thing for insurance purposes and they don't have a lot of time to listen. Ironcially, it took a visit to a Neurologist in October to even have my bloodwork ordered. Turns out I had probably viral Meningitis...not confirmed though--even though I had over $10,000 worth of tests. I think because I don't have enough related symptoms to any one thing, the docs aren't taking my results seriously. I'm not sure why they aren't addressing my ANA, ACE or low eGRF since the neurologist was concerned about them. The ACE can be a sign of Sarcoidosis which is an autoimmune disease that can affect a variety of organs, but is most common in the lungs. I had a normal lung CT in August though. My PCP consulted with others in the practice and they are "guessing" I don't have Sarcoidosis, but that I have a normally high ACE, even though my readings are way over normal. I had a chronic horrible cough from July-September that was put down to just having reflux act up. Three docs have said there is nothing more they can do for it. The elevated eGRF shows potential kidney problems but no answer on that either.

I have had some fatigue. I have had a sleep study that came back "normal" although I was wearing a sleep splint that holds my lower jaw forward at the time. I was diagnosed with Anemia in August. With supplements, my HCT is now normal, but my B12 has gone down to low normal so I started on B12 shots last month. They also attributed the fatigue to my LPR/GERD as well.

I have some muscle & joint issues. Mostly it has been attributed to tendonitis, bursitis, hypermobility, cervicalgia and myofacial pain. So far no arthritis, but I've been told I'm in danger of developing it in my jaw in the near future. I found out I had TMJ just over a year ago. My PT said my hip, back, wrist, knee and shoulder pain can be attributed to my body being out of alignment from the TMJ. I'm not sure what to think. I've been fighting with insurance to allow me some more PT, but they are balking at paying for more than 6 visits with the same PT, even though I'm allowed 20 per my plan. I'm having tons of problems with my shoulder and neck right now. It is starting to spread back down to my wrists again as well. I've been on muscle relaxers the last couple weeks. I'm concerned about taking any NSAIDS due to digestive issues.

I've been in to see the doctor so many times over the last few years that I sometimes feel the docs think I'm a hypochondriac. I just think I have several issues going on that may or may not be related. I've considered finding a new PCP, but the last couple times I did that I couldn't get in to see them when I was sick--2 weeks out for a bad sinus infection visit isn't reasonable in my opinion. I had an incredibly good PCP up until 5 years ago, but she changed to a practice that doesn't take my insurance. The one I see now is pretty good, but I don't have that same connection.

I do have a TMJ specialist who is convinced my "body is sick." He thinks I have adrenal fatigue, but because traditional medicine doesn't recognize it until it is severe, I would have to see a Naturopathic doc who isn't covered by insurance. I work in the social service field and can't afford that.

What was the defining thing that your docs did that led to your diagnosis? What kinds of doctors and therapists do you find most useful?
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Last edited by MountainReader; 01-17-2011 at 10:35 PM.

 
Old 01-18-2011, 10:54 AM   #9
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Re: I'm miserable..

No I haven't seen an upper cervical care chriopracter. If I was going to go back to something like that, I would not hesitate to go back to my PT doctor. He was great. He knew how to relieve the restriction in my spine, and it worked so well, but it just didn't fix my back problem, I need an MRI, no way around that. I have been dx'd with TMJ but it doesn't give me alot of trouble, it hurts to chew when my jaws are hurting, and it's my back making my jaws ache now. It's crazy how pain radiates even crazier how it can make you sore there in a spot that isn't the actual problem. My PCP isn't
like that at all, I can take a million complaints to him at once, and he will take them all on. I feel so bad aggrivating him like I do. I saw him the end of Nov, back last month over my bladder problems my other doctors can't seem to resolve, back next week over this hell I went through over
this weekend. I feel like a hypocondriac sometimes, I don't need them to think that for me. No, getting an appt over being sick for any reason, is not unreasonable. They was going to put me in today though they didn't have anything open for me, but I called and told them I was feeling better. A good doctor is going to take care of you immediately. Have you seen a urologist over the elevated GFR? They haven't diagnosed kidney disease from that? That is crazy. I'd be a bit concerned over that, unless it's just a very mild elevation, you need a new doctor. I didn't know reflux causes fatigue. Maybe you have some post nasal drip with the reflux causing the cough. Your right, you don't want NSAID's when you already have reflux or digestive issues. I am vomitting blood thanks to them. I wondered too if I had adrenal fatigue before, I was diagnosed with chronic fatigue syndrome and based on my positive ana, told I had an autoimmune dysfunction, and would be sick the rest of my life. They can test your adrenal glands, but I don't think you need it. Your tests are being ignored and they shouldn't be. Like I already mentioned, your ANA is way too high for them to be doing that. I can't remember you mentioning it, but have you seen a rhematologist over that? It is a PCP's job to send you to a rhematologist in the presense of a positive ANA and not their job to guess whether you have an autoimmune disease
or not, it is not their job to say you don't, they can help, but they are not qualified to make the diagnosis. The rhematologist is the specialist to do this. Any good rhematologist would never take ANA results of 1:640 with symptoms present of the disease and dismiss them as being nothing. If you haven't seen one, I would demand it, I wouldn't care if my doctor liked it or not. Let me get back to you shortly on those last questions, that will take a little time to explain.

 
Old 01-18-2011, 11:48 AM   #10
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Re: I'm miserable..

When I first got sick, it was just chronic fatigue. Hit me off and on and then became every day. Pain followed later on. I went to a RN in natural medicine, she did the ANA testing, (ANA 1:320 homogenous, nothing else showed up in my blood work), she diagnosed chronic fatigue syndrome, and told me I had the autoimmune dysfunction, and would be sick the rest of my life. I did natural suppliment therapy for fatigue, not at all helpful. She was over an hour away so I found a doctor here to go to, and was questioning if I had Lupus. He diagnosed me with Fibromyalgia, due to the lack of anything showing up on tests, and based on my long term pain. My ANA was still positive 1:320 and he sent me to a rhematologist. He diagnosed me with mild Lupus and said my blood work would likely show it later on, I was treated with 100mg of plaquenil daily. For one, plaquenil will not work if you smoke cigarettes, I will sware my life to this, and that low of a dosage is not effective for me. The autoantibodies did not show up at this time in my blood work. My rhematologist did the tender point test on me and said I didn't have Fibromyalgia. Well him and my other doctor had a bit of a disagreement over that one, and when my rhematologist got mad at me one day for being there, saying my PCP could have treated the symptoms I came in with, I got mad, quit going to him, and woolaahhh 14 years of a fibromyalgia diagnosis. I argued with my pcp until I was blue in the face over this. I did not at the time really even believe in fibromyalgia and to me it just wasn't the answer to why I was so sick. Well he told me out of his own mouth, he just didn't know what else was wrong. I was not followed up with ANA testing after I quit going to the rhematologist. He did one and it came out negative and that was it, he said I likely did not have Lupus, and it was probably the plaquenil that made that ANA negative at that time. They don't bother telling you that it can do that either. My blood work has always been pretty normal. I had sleep studies done and I have a mild case of upper airway resistance syndrome, similar to sleep apnea, but I used a cpap and it did not help my fatigue and my sleep doctor said there has to be something more wrong with me, that it wasn't what was causing that kind of fatigue with me. I also went through severe depression, was suicidal at one point, and alot of doctors blamed my fatigue and pain on that, some of them just made me feel like I was crazy. But I really knew better. I have the fatigue, widespread muscle pain, muscle spasms, burning, twitches, muscle weakness, severe reflux, bladder inflammation (IC), irritable bowel, slow digestion, all over tingling, shooting pains, recent vitamin deficiancy's, cholesterol problems, my blood pressure is just recently shooting up, PVC's, I have never had anything seriously wrong with me. But yet, I feel so horrible, I have been unable to work, and barely functionable. I couldn't even keep up with the simple task of housework. The worst thing I've had wrong would be kidney stones and my risk for esophageal cancer, but I don't have it yet. I am in serious question if I have lung disease. I can't get a simple dumb xray to find out. I had these blisters that kept breaking out on my outer lip off and on for along time, I attributed that as cold sores, last year, right before I'd get the outbreaks, I would sleep half the day, and then get a breakout, and I would be so run down, it wasn't even funny, it would last for a week or more. This kept occuring a month or two at a time, so I had my GYN check me for herpes, but I didn't have herpes, so the only other explanation I could think of is maybe I really did have an autoimmune disease. I have been driving myself nuts all these years wanting to know why I feel this way, don't think I haven't. So I just ordered some blood work offline and went to a lab here and had my ANA checked, it was positive, and showing my RNP levels at 7.3. I thought OMG I finally know why I feel the way I do. Took it to my PCP and his PA did blood work and he told me bluntly that if my ESR and RF came back normal, that would mean I did not have an autoimmune disease. My ANA came back 1:640 homogeneous and 1:640 nucleolar. They put me on Mobic and I got some doxycyline and started taking it, and a month later, I am feeling amazingly better. I go tell my doctor, but he didn't mention my ana being positive, I had to pick up the results at the office and find out on my own how it turned out. So right after I saw him, I went back and had my ana checked again, my RNP dropped down to 3.4. Then I got taken off of mobic over my ulcer and I just quit taking doxycycline too. I thought it was the mobic making me better, I had no idea it was the doxycycline, that's an antimalarial antibiotic, it can help your immune system just like plaquenil can. Well I went back a month after I stopped taking these medications and my RNP is shooting back up again, have it checked again, same thing. I then got ahold of plaquenil, wow baby. LOL. I quit smoking over a year ago, and this medication was the most amazing thing I ever felt in my life. Bye fatigue and goodbye pain. I took those results to my doctor, and told him about the plaquenil, and I'm like hey, I think you all are wrong about me not having an autoimmune disease. He then agreed, and diagnosed mixed connective tissue disease, told me I definetly had the symptoms, and he's now questioning my fibromyalgia, and sending me back to a rhematologist. I had to take this into my own hands, more or less to say, and it is a shame that I had to, but whatever it takes I guess, I am very happy to know what is really wrong with me. I can't even tell you how much. But it's awful knowing I get to be ill the rest of my life because of. I am doing better taking plaquenil still, I can function, but I am tired again and I am hurting again, it's not a miracle. Was for 2 months but then it got to where it wasn't as effective for me. I still however can see quite a bit of change on the medication. It sure is better than nothing. I wouldn't want to see anyone have to go through what I did to get to where I am now. The time I spent crying and in total misery wishing I knew what in the world was wrong with me, wasn't even funny. Or necessary. I don't think my body will recover, this 14 year journey of not knowing what it was, and the effects it's taken over on me. I am a 40 year old in a 100 year old dysfunctional body. Don't let your doctors do you that way. I know my PCP didn't know any better and I don't blame him at all for this, but I was suicidal for along time over being this sick. I have not been able to tolerate very well at all. I still don't know how I am going to make it through life another 40 or 50 years like this. I just have to hope it will continue to get a little better over time. I have to see a gastoenterologist, what I would do without her, I don't know. I could live without my gynecologist and urologist without problem, lol. Pain clinic wouldn't even help me when they sent me. I have been to a sleep doctor, neurolgists, not really helpful though. Rhematologist will likely be the one to get me to feeling better. My PCP is the one I depend on more than anything. If he ever retires, I am going to cry my eyes out, if I couldn't cry to him over these problems I have, I don't know what I would do. My family doesn't put up with my crying. Over the weekend, my daughter's dad was like go in the other room, I am tired of hearing you moaning, and I did, and started crying from the pain, my daughter yells at me to shutup. Talk about mean! But I honestly would croke over and die without my PCP, he is like god to me, I could not survive any of this without his help. I have been to physical therapy numerous times, the massage therapy was helpful, I loved my last PT OMG amazing, he's like a mix between a massage therapist and chriopracter all wrapped up in one. I also went to a chriopracter, I cannot brag over cracking of the bones, all it did was make me feel like I needed to repeadly have them cracked, it was great for relieving temporary tension, but in the long run, it just caused more. Went to a natural med doctor, I did like him, he had me on valium for years, I did find that helpful, and that white fish stinky pills he gave me for my digestive issues was amazing. I've tried alcupuncture, didn't like it, chinese doc, didn't help. I also had to go to a psycologist and psyciatrist for awhile because of my depression, it was helpful after so many years of crying it out. LMAO. I haven't had luck with meds much. Muscle relaxants is hard to take when you are already tired, just makes it worse. NSAID's I can forget ever using again. Ultram, Darcovet, what all did they give me? IDK. Adderall & Provigil, provigil only helped me feel awake, didn't stop the fatigue, and adderall was crazy, up and down crashes. B12 shots and vitamin D pills, have not phased the fatigue. Lortab kicks butt with pain but the stomach pain that causes isn't funny. Of course, it makes you tired too. Don't they all. Duragesic patches can stop any pain you ever felt, but that is what caused my GERD. Meds suck. Plaquenil is the only one I can say is the wonder. And I would roll over and die without my ambien to sleep. I get blood work off and on now out of wack. My liver enzymes elevated, oxygen levels elevated, lympocytes are pretty low once in a while, cholesterol is always out of wack, blood is always in my urine, but most of time, overall good! Just always had positive ANA's, all but one. It was the only real link to why I was sick, and was so overlooked.

Last edited by neveragain444; 01-18-2011 at 12:47 PM.

 
Old 01-18-2011, 10:23 PM   #11
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Re: I'm miserable..

Wow...thank you for sharing your story. It was very enlightening. I'm sorry you've had to go through so much.

I'm your same age. I think I'm just at the beginning of the road for the autoimmune thing though.

I've had reflux & asthma issues for years. My reflux is so severe that it irritates my lungs and flares my asthma. I end up with a chronic cough that is so bad I can't catch my breath. It even caused me to almost stop breathing all together a couple years ago and I ended up needing emergency treatment... way scary. Anyway, when I say they attribute some of my fatigue to reflux, it is because all that coughing and not getting a good breath really wears me out, especially when my "flares" usually last about 4 months. I had a successful Nissen Fundoplication a couple years ago, but still have severe reflux. They can't close my LES completely or I wouldn't be able to eat. I worry about the long term high dose usage of PPI's though.

My neurologist was concerned about my blood test results, but not my PCP. I do go back for a follow-up PCP visit in 2 weeks and will have more labs prescribed then. I go back to my Neuro for a final visit in February. If my PCP doesn't give me the direction I need, I plan to discuss it further with the Neuro. I have never been referred to a urologist or a rheumatologist. I do regularly see my PCP, ENT/Allergist, Pulmonologist, Gastroenterologist, TMJ specialist, Chiropractor and PT (as insurance allows), and Audiologist, Opthamologist. I also have an ortho and dermatologist I see as needed. I've never had a full-on assessment for Fibro or Lupus, but I know from experience with my PT, Massage Therapist and TMJ specialist that I have tons of problems with trigger points. I've never tried checking for the tender points, but from what I read on the internet, they may very well match up to my worst areas. I do have problems with muscle spasms in various areas and am currently on muscle relaxants to help. I've been trying to get approval from insurance to start PT back up. August was the last time I had any therapy. Thankfully though, my ROM is currently good on my joints. That isn't always the case. My massage therapist can spend an hour working on me and my muscles still won't "loosen" they are so tight and spasmed. I can feel it getting worse by the day though in my shoulder, neck, hips and lower back though. I've been having wrist and elbow issues too, but I'm not sure if they aren't caused by the neck stuff or not. I developed IBS in 2008. Between that and my reflux, it has played havoc with trying to eat a balanced diet. I was diagnosed with Anemia last August and low B12 in November. They haven't found a reason for the anemia, but put it down to the fact I'm still having periods, even though they are much lighter than they used to be. They have attributed some of my fatigue to that as well. I do have hypertension. It is currently under control with Dyazide. Odd thing though, even on a diruetic and calcium channel blocker, I was averaging in the 140's/90's for years. Not long after I had my reflux surgery, my BP dropped suddenly. I was able to go off the CCB and now average in the 110's/70's. I have no idea what the connection is there.

I'm not sure the connection with everything, but I got so worn out between July and September that I was struggling to function. I ended up so worn down that i ended up with viral menengitis. I ended up on FMLA and used up all my medical leave between October and December. It was great I had it, and I felt better when I went back to work, but I worry about keeping up with the stress going on at work. I'm single though so I have to support myself and keep insurance though. I'm kind of paranoid of having a flare of any sort.

Anyway, thanks for sharing and your support. I hope you find something that helps you get through your current flare of pain.
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Old 01-19-2011, 06:31 AM   #12
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Re: I'm miserable..

You keep telling me this stuff, I am going to make a special trip to where you live and kick your doctors hindend! I sware. My uterus had chronic inflammation, I forget what the disease was called, fibroids, I had clotting in my periods, really heavy bleeding, I never developed anemia from it. I also had large amounts of blood in my urine all of the time, from the IC, prolapses, renal stones, I am vomitting blood now from my ulcer, still not anemic. Did they think to ask you about a hysterectomy if they think it's causing anemia? It's awesome not having a uterus and not going through those painful periods monthly anymore. I don't miss it. I sure don't want anymore kids, lol, so that is no big deal that I had that procedure done. If your still anemic, you might consider that as an option. Anemia can worsen because of periods. It can definetly cause fatigue. Iron deficiency anemia would be likely due to your asthma. As long as they rulled that out, and bleeding from elsewhere,
ok, and I hope they fully evaluated you on that one, but I bet they didn't. It just sounds like they are taking your health problems as a joke. I breathe funny too, every day, I suck in air forcefully and then hold my breath, I might have to ask my gastroenterologist about that maybe being the reflux. So far, I've had no explanation for it. My reflux is so bad, they told me I will end up with cancer if I don't take my medications, I haven't been offered surgery for it, like ever, they think where I have gastroperesis, that it makes my reflux worse, but treatment for that didn't phase it after a month, she said to just stop taking the medication then. She might of tried me on another, but the risks of side effects with these medications I guess are extreme. They took aciphex from me because my insurance doesn't cover it and I got too sick to pick it up in the office a couple of times, and it's the only effective reflux pill I've used. They have suspected rhematoid arthritis or Lupus with my 16 yr old daughter, but she will not let them test her, it's her doctor that told me how your family physician has no right, if you have a positive ANA, to not send you to a rhematologist for evaluation. I had to put her in with a different doctor, but she told me my daughters knees swell all of the time and hurt, is because of this thing caused by growing pains, and that she will likely grow out of it. I think my daughter also has the symptoms of raynauld's disease. Her body temperature stays low in her legs, feet, hands, and she turns blue & later red, Her first PCP agreed with this and she said she could very well have developed autoimmune disease where I also have it, but the other doc blew it all off. Poor thing has to wear ace bandages on her knee all the time, the pain gets so bad, or she wouldn't be able to walk from it. Doesn't matter much until the kid will cave in and let them do blood work to find out. I would really have preferred to keep her with her first doc, and she's been going to them all her life, but she just wanted to get out of seeing all the physician assistants there and have a real doc. If she's not happy, I can't get her to go see them when she's sick, so I really lacked a choice. You really need a doctor to take that ANA seriously, I'm sure everyone on this forum would agree with me on this one. If your in the beginning stages of AI disease, you don't want to let it go, and then end up totally dysfunctional because you didn't get the appropriate treatment. Well I hoped it helped, I hope you ask for that referral, I know good and well you need..

Last edited by neveragain444; 01-19-2011 at 06:42 AM.

 
Old 01-19-2011, 09:27 PM   #13
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Re: I'm miserable..

I don't know how you keep track of everything. You have really been through the wringer.

I have had blood work, stool samples and an upper endoscopy with biopsies to try to find the source of my anemia. Most of the results came back negative except those that show the anemia. They just put it down to iron deficiency anemia. My GI doc is supposed to be one of the best in my area. Most docs refer to him. I've been pondering going to a doc in the university system. The travel will be hassle though... and the time off work with the extra travel. I really do wonder if all my high dose PPI's I'm taking are keeping me from absorbing the iron like I should. My GI doc doesn't seem to think so though. I do know I went straight to B12 shots because my Neurologist felt I wouldn't absorb it well in another form. If I decrease my PPI's though, I'll end up with an asthma flare from the acid.

PPI's work differently for everyone. In my opinion, the prescription version of Prevacid in the Solutab format was the best. Dexilant works just as well. The Dexilant has a great manufacturers instant rebate for up to $50/month. Makes it the most affordable option.

I'll keep you posted on my follow-up appointments over the next several weeks. If they don't help, I'll see if I can refer myself.
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Old 01-19-2011, 10:46 PM   #14
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Re: I'm miserable..

Haha yeah I have an upper respiratory cold and didn't know it too, I'm glad it's not an AI flare, and I can take an antibiotic and feel better alot sooner than I could with the other issue. I used to take my reflux medication on just an as needed basis, and felt like my symptoms were managed that way. I had low b-12, low vit d, slow stomach emptying, I can't blame on PPI's because I didn't take it much, but even if my symptoms felt controlled, the inflammation was getting worse. You wouldn't want to decrease it and make the acid worse or asthma.. That would not be good. Awww ok, good luck with things, and you keep in mind long term too that if your feeling run down all of the time & in pain, and they don't give you answers, you have this possible AI disease you can have looked into with a rhematologist. My first doctor was right when she said I had autoimmune dysfunction and could count on being sick the rest of my life. I should have listened to her, instead of crying all those years wondering what it was. She had more brains than any of them did. lol.

 
Old 01-19-2011, 11:47 PM   #15
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Re: I'm miserable..

My TMJ specialist really wants me to consider an anti-inflammatory diet to help my body "heal" itself. His theory is that my TMJ won't totally get better until my entire body is healthier.

Do you use a neti-pot or saline sprays? The neti-pot can help clear out the gunk that your nasal hairs catch. With dry winter noses, it even helps more. I really like the nasal spray Xlear. It has xylitol in it to help keep bacteria from doing their thing. Humidifiers also help this time of year.

Feel better,
MountainReader
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