Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Archives, page 3 Dear DR. E. I just came across your column and have already learn't a great deal about fibro.It is a comfort to know that others experince some of the same discimforts as myself.Ihaven't read much about the magnets to help with blood flow and lessening some of the pain . Do you have any comments as to the benefits of using these?? Some well meaning friends have suggested I use them and I thought I would ask for your opinion of the use of them. I also suffer from RA for many years,and angina,hypothyroid and about 6 mons. ago my Rheu.DR. told me I also have this fibro.Any help and words of wisdom are deeply appreciated. Thanks for letting me talk to you and keep up the good work. Priscilla I have recently received two books. One from a patient a book relating to magnets: " Magnet Therapy- The Pain cure " by Lawrence and Rosch; and the other book " The Pain Relief " by Whitaker from a Magnet company. Both books claim that magnets somehow induce a pain reduction. I do not know how this effect can be explained or indeed if it is true. The side effects are minimal, no habituation, no nausea, no cross reaction with other medication. My attitude is usually sceptic, here scepticism is still present but as it seemingly can not do any harm it may be worth trying. The only harm is a worthless waste of money as the magnets are expensive. DEREK ENLANDER MD FMS CFIDS Center I am 45 years old- a former thyroid cancer patient-( 16v yrs ago). I was recently diagonosed with Fibromyalgia. I am also 125 lbs overweight. Obviously I know that losing weight would improve my overall health- and I am attempting a weight loss effort- is there any correlation between obesity and Fibromyalgia. I get very little support from my family because they believe all of my aches and pains are because of the obesity and nothing more. But all the literature I have read on Fibro- describes me. I often have a great deal of swelling in my ankles, and difficulty waling because my heels hurt so mucy. Is that fibro related.? Also in reading through your archives I understand that you suggest that when you do use pain medication you alter the kind you use so that you don't get used to any one kind. I currently need to take either a Vicodin, Darvocet or a Fiorcet at night to take the pain away at night to enable me to sleep. My pharmacist says that one pill per day is not addictive, yet my nuerologist is paranoid about giving me any pain medication whatsoever. So I play the game to obtain drugs ffrom between my family doctor, a psyciatrist, and the [rheumetolgost. Could you shed mor light on the use of pain medicaiton in pain management Mikki Pain is a great problem with FMS. Pain medication is carefully controlled by the DEA (a Government Department), a doctor can lose his licence to practice if the dept. considers he is prescribing too much pain medicine. There is a problem with most pain medicine, some patients can be habituated with even small doses. I tend to rotate pain medicine in an attempt to avoid this, and also to avoid the problem of getting used to a medicine and having to increase the dose to give the same effect. There is a new pain medicine Duradesic, a patch which is applied to the skin and lasts for 3 days, a number of patients have been helped by this. The drawback is that it is expensive. It needs a triplicate (DEA) prescription With regard to FMS and obesity, not all FMS patients are overweight, so there is no direct relationship. Obesity however can magnify some of the symptoms and you must lose weight, a severe weight lose program must be started under your doctors control. We have an exercise physiologist in our practice to monitor overweight patients and prescribe appropriate diet and exercise, too much exercise causes a setback. DEREK ENLANDER MD What is Kutapressant and how does it work for FMS? Thanks SS Let me start by saying we do not know why FMS occurs nor what causes it. Having professsed such ignorance now the subject is open to wide discussion. In my opinion the disease is a system wide, body wide, condition, not only certain muscles and trigger points are inflamed but a whole series of problems are manifest, from joint pain, inability to concentrate, short term memory loss to fatigue etc. If this system wide disease is inflamatory then the immune system is involved, the immune system is not recting normally. In order to mediate this we use kutapressin. Kutapressin has been used in other conditions to activate the immune system, it is a complex of amino acids derived fom liver amino acids. It is given in intramuscular injection weekly. We use it in combination with magnesium sulphate, folic acid, B12, calphosan and glutathione. Enlander MD FMS CFIDS Center If Kutapressant stimulates the immune system what would it do to someone who has thyroid problems. I have had thyroiditis since third week of Feb. I have heard I should avoid things like Ecanatia as it *might* stimulate the immune system and cause thyroid problems. Any thoughts of this? Thanks Shirley I can not with certainty answer this. Patients with Hashimotos autoimmune thyroiditis do not have problems. I would wait until the throiditis flare-up has passed DEREK ENLANDER MD I'm in the Army and in January '99 injured myself shooting video from a helicopter, which caused muscle spasm of my trapezious muscle of my right shoulder and turned into an inability to move my head in any direction, I could not lift my arm and had shooting pains in my median nerve and could not perform fine motor skills without much pain. Since that time, I have been in c-spine traction, doing muscle strengthning exercises for my right shoulder, and pool physical therapy, but the symptoms still persist and have moved to my left neck, back, shoulder, and hand as well. The Army doctors have put me on a exercise program limiting my acitivities to just walking for exercise and shortly there after I developed plantar fasciatis of both feet when previously I had only had it in one after breaking my right foot last May. Both legs hurt most of the time, It's a dull achy feeling and they feel so tired they don't want to walk and its a relief to sit but after a while that gets uncomfortable. I sometimes can feel the vibration of my car under my legs and its irritating. When I wake up in the morning it is not only difficult to walk right away but my shoulders are hunched and I feel like I've been beaten all night. I do have trigger points along my back, around my shoulder blades on both sides, But I've not been able to find any others in my body. I don't know where to look? Other places I hurt include the tops of my feet, the roof of my mouth (I get a spasm sometimes when I eat), I keep a headache in the front of my forehead and sometimes in the back of my head if I'm really tense. I have a sharp pain in my hip/butt but the worse thing is the tired,weak feeling I have all the time. In June, I have to go to a board for the Army doctors to decide If I'm fit for duty. I've not had to carry any weight on my back or a weapon or even the 35 pound television camera I'm supposed to carry to perform my job since the initial shoulder injury but my biggest concern is that no one seems to know what is going on with my body. I've had MRI (showed spasm), Bone Scan,( Arthritis of the hips, left worse than right and stress changes of both legs), Nerve test of right arm and hand, (mild carpal tunnel), the orthopedic doctor said that regular xray doesn't show anything alarming to him and that it sounds like classic lupus because I'm black, and my blood work, (Positive ANA-1/160) . I don't have any rashes or anything external and the things the doctors tell me don't justify the pains I have daily. Currently I'm on Tramadol and Sertraline and they help but they make me very sedated. The surgeon says I'm under a lot of stress and it will probably go away once they put me out because if I'm diagnosed with Fibromyalgia its not deemed a real disorder yet. Does it sound like fibro or could it be lupus in the beginning stages? I'm sorry to be so wording I'm trying to get as much information as I can before they boot me out of the Army with no medical insurance. It is obviously impossible to make this diagnosis without careful examination, The diagnosis of SLE (systemic lupus erythematosis) is crucial and has to be explored. This is a serious condition and must be careful explained by your physician. DEREK ENLANDER MD Dr. Enlander - Just found your website thanks to co-cure. I've had Fibro for 5 yrs. Heard tonight that our local doctor thinks that an anti-biotic commonly associated with curing acne can help people with fibro. Do you know anything about this, i.e. the name of it? Sounds like a Nobel prize winner, unfortunately I have not heard of this miracle. Enlander MD Dr. Enlander, Three years ago, when I was having classic symptoms of fms, but had not heard of it, I started with my Gynecologist as I was due for my yearly exam. I knew I felt lousy and it seemed a logical place to start. For the first time ever, I had an abnormal PAP. Because of the atypical glandular cells and atypical squamous cells that were (and are) present I have spent three years doing repeat smears, colposcopy, & biopsies. All the pathology reports are always normal and I'm told that there is " probably just some inflammation " causing this. In the meantime, continuing the fms symptoms, my G.P. referred me to a Rheumatologist who gave me fms info. and the diagnosis. Is it possible that the fms would trigger an inflammatory response that is continually showing up on a PAP smear? Thanks. R. If you believe as I do that there is a corelation between FMS and CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) then you may understand that the immune system can produce inflamatory response in various places muscle, joints, larynx, vagina, cervix etc. If a biopsy is taken a normal or non specific pattern is usually reported. We therefore treat the disease with a kutapressin complex. INTERFERON PROJECT At present we are enrolling patients in an interferon research project, patients who are interested in this project should contact us at (212) 794 2000 enrollment takes place Thursday Mornings between 8 am-12 noon . DEREK ENLANDER MD FMS CFIDS Center New York Doctor, have had fibrimylagia for quite some time but, I have noticed that since I received 1 injection of Lupron for endometreosis, that my symptoms are much worse along with severe migraines. Do you have any suggestions for me that might help? Thanks for your time. And I pray that something will be done for this syndrome,if the people who do the research had this pain, I am sure they would try harder to find a cure!!!!!!!!!!!!! Thanks again, Sally I prescibe Duradesic patches for pain, the advantage is that the nausea is reduced thro the patch and the pain medicine is administered constantly over a peiod of three days. DEREK ENLANDER MD 8 years ago i was diagnosed with fms, over the last 8 years my symptoms were mild, and frankly i took discalcid , prescribed by a rheumotoligt 1 or 2x a day, over the counter meds to sleep, and took a lot of tylenol and vitamins. the mild episodes were tolerable and frankly I forgot what heavy duty fms was like. I had a bad case of the flu this year and was taking antibotics 3 different times and no relief from the flu. suddenly I had a bad neck and arm problem that no one could figure out what the problem was, suddenly I started with all the old fms symptoms heavy duty, pains all over, iritable bowel sym., headaches, depression and anxiety. It was a miracle I picked up an old book on fms and sure enough, I figured out it was fms. I had a cortisone shot in my shoulder but the radiatiing pain down into my left arm with burning that is unbearable. I was spoiled for 8 years and now that the pain is so severe, I get scared. Is this normal to happen after the flu, because thats the only thing that makes sense to have brought on this episode of fms. I need a good list of rheumotolgist in South Florida. Thank you in advance. Bubbly YOU ARE SUFFERING FROM A FMS RELAPSE . This frequently occurs after physical or mental stress, the stress may be an infection or it may be another stressful episode. I have no referral to send you to in Florida. DEREK ENLANDER MD FMS CFIDS Center New York editor's note: Email Masaathoff@... with your inquiry and personal info and she will snail mail you information about doctors in your area. Anyone may contribute information about doctors that they have seen and also information about support groups. I was diagnosed with fibro. 7 years ago, along with the chronic fatigue. I have severe scoliosis, osteoporosis, degenerative arth. of the spine, focal seizures since 1991, and in November I was put on oxygen for fibrosis of the lungs. It seems my energy level is even lower. The chronic fatigue was bad but had seemed to sort of level off--not spending entire days in bed because I was so tired I could do no better. I had to quit my job as office manager when I was diagnosed with FMS and CFS. My question is why do I feel so much fatigue? My doctor can't seem to answer this--other than weather changes affect us, etc. All my blood levels are fine. He did check this. Thanks, Anita Fatigue is common in both FMS and CFIDS, it is an immune system disease, possibly caused by one or more of five viruses, the viruses that have been implicated at various times are EBV, CMV, HHV6, ackie B, and a retrovirus. Have your doctor check for these . Enlander MD I have had FMS for 13 years . I walk and ride my bike for exercise and always stretch before. I have a Pool that can be used in summer, but winter brings on problems. Exercise definitely helps ! I work full time plus ....owning my own business. I have recently gone to the gym ...trying to work with weights to stregthen my muscles. I was very sore and ached for a couple of days, although I did continue to walk. Is weight training out of the question for FMS patients? I am 47 years old and a little overweight ...after losing the weight i gained at the beginning of FMS ...all the mixed meds I was on was unbelievable. I take Elavil 20 mg at night and for pain advil or small dose of darvacet. I still have a lot of pain ..I have learned to deal with it ....listening to my body, when it needs rest etc. I am a Hairstylist..and it causes pain in my neck, arms, hands etc. I am really worried about my muscle mass ...can you help me with some exercises to help? Thank you so much ..Sherry I have an exercise physiologist who works in my office, he suggests that you contact your doctor to put you in touch with an exercise physiologist who will work with your doctor. Light weight is in order, excessive exercise will produce a relapse. DEREK ENLANDER MD Dear Dr Enlander, I am a 27 year old woman with Fibromyalgia, Reflex sympathetic Dystrophy, & Asthma currently living abroad with my husband who is in the military. While I am doing well on my medications & have adapted my daily life to help with my conditions, I am now gathering information to submit with a request for ground level government quarters to our base housing office. Stairs have always been a very big aggravator to my symptoms, not only with the normal walking up & down, but with carrying groceries, etc. I have a 2 year old child & know full well what the ramifications of being unable to walk up & down stairs can have not only on my physical well-being, but the emotional well-being if left housebound. I have found that even in the worst of pain, the ability to sit outside in the sun can help. I have once been housebound for several months, and found that the emotional tole it added increased my pain. I forgot to mention my symptoms are full-body from the neck down, and I have been coping with this for 14 years. Stairs have always been a problem for me, increasing my pain & increasing symptoms. Any information you can provide to help in our request for ground level housing would be highly appreciated! Thank you! I sympathize with your pain and suffering. You must enlist ( to coin a phrase militarily) a specialist to submit a report on your behalf enumerating the problems both medically and socially. We have done this with effect on numerous occassions. DEREK ENLANDER MD My doctor just told me that I have fibromyalgia. I was in an accident in sept. and since them I have had pain everywhere, can't sleep, Cant remember things and just dont feel right. Well my doctor said I had to increase my serotonin level. He said I have serotonin depletion syndrome because of fibromyalgia. Have you ever heard of that? He has me on Paxil 20mg and every 4 days I increase a pill all the way up to 6 pills a day. I would like to know if you think its safe and have you every heard if it helps? Thanks We do not know if serotonin is the active factor in FMS Many patients are treated with an adjunct of Paxil, which does act on brain serotonin and assists in the depression which frequently accompanies FMS, however the dose you mention is larger than that commonly used. DEREK ENLANDER MD I believe fully in alternative medicine. For the last two years, I have been taking 1,000 mg. to 3,000 mg. of ma huang and 3,800 mg. of guarana seed daily. My body looks great. But I have major mood swings, depression at times, and infections. Is this from the ma huang? Some herbs are potent and life threatening. Just because a herb is called a herbal remedy it is not necessarily safe and innocuous. Ma huang (herbal ectasy, or Ephedra sinica) originally comes from the Far East; Mongolia, China and India. A synthetic version of ma huang is the active ingredient in the decongestant,Sudafed, The herb must be carefully used . In high dosages, ma huang suppresses the appetite. As a result, it's commonly misused in the West as a stimulant or for weight loss . There are documented deaths attributed to overdoses of ma huang. In high doses, Ephedra sinica can cause lethally high blood pressure and cardiac rhythm disorders. Even in normal doses, it can cause headache, irritability, restlessness, nausea, insomnia, heart rhythm problems, urinary retention and vomiting. Its effect in the body is similar to adrenalin, only longer acting. The herb is known to cause dependence. The body will become resistant, and you'll need to take more to have the same effect. Ma huang may have serious, life-threatening cross-reactions with conventional medicine. Guarana, is derived from a climbing Amazon jungle vine, the seeds are loaded with caffeine like drug . High doses can cause rapid heartbeat, elevated blood pressure, vomiting and abdominal spasms. It is traditionally used only as a tonic. Can be toxic high doseage. Again be careful with taking any drug whether it is a prescription or a herb both can lead to addition or cross reaction., DEREK ENLANDER MD Hi, I live in Auckland, New Zealand. I have been diagnosed with FMS and have had blood tests recently which leave me confused about my diagnosis. The positve ones were ANA 1250, and CRP 10. These results have been consistant and other tests for lupus,arthritis were negative. I have also had episodes of protein and blood in my urine (not high levels) and developed an unusual pain in my left side at kidney level a year ago. Is there any other condition I should be checked for as I believe there are no positive tests for FMS. I would reccomend that you see a specialist in SLE, systemic lupus erythematosis, to rule in or out that diagnosis, the protein in urine is not common in FMS Enlander do you take medicare patients? someone is asking me...... linda Yes we accept Medicare DEREK ENLANDER MD Haven't tried Kutapressin as I'd heard it's bovine and I'm allergic to beef. I've also heard it's porcine. Could you look at the label and see which it is, please? It's porcine as pig liver is more akin to human amino-acid makeup ..DEREK ENLANDER MD Dear Dr., Is it common for fibromyalgia patients to get adhesions more than those who do not have fibromyalgia? I had a ruptured ovarian cyst when I was 26 and have had two more major surgeries to correct the horrid pain caused by massive adhesions affecting ALL of the pelvic organs and I am still having problems at 47. I have had fibromyalgia for a very long time. Thanks, THERE IS NO EVIDENCE OF INCREASED POST SURGICAL ADHESIONS DEREK ENLANDER MD FMS CFIDS Center New York Dear Doctor, I have been suffering from Fibromyalgia for the past eight years. I also am suffering from Meniere's disease of the inner ear. Is there any correlation between the two disease processes? No although FMS patients can have inflamation in the auditory nerve that simulates Meniere's disease DEREK ENLANDER MD I have a severe case of FMS, and also have ovarian cysts. I can have surgery and have my ovaries removed. I have been putting it off, afraid that surgery will worsen my FMS. Do you think it will take me longer to recuperate from the surgery? Do you believe having FMS will cause me more pain then the average patient? SURGERY AND ANESTHESIA FREQUENTLY CAUSES A RELAPSE IN FMS WITH A PROLONGED RECUPERATION DEREK ENLANDER MD Dear Doctor, I have been diagonesed with Fibro for about five years. What I would like to know is if there is a connection between my Fibro and Granuloma annulare. I have had this skin condition as long as I have had my Fibro. It is on my arms, hands, and chest. I have researched this condition and can find very little about it. Any info would be greatly appreciated. Thank-you Ruth . There is no known relationship DEREK ENLANDER MD I was diagnosed with Fibromyalgia well over 6 years ago and have been given several different meds to help the condition since that time, all of them bringing very little or no relief whatsoever. I have a new problem and would like some advice - recently I have noticed that I have " permanent " charlie horses (cramps) in my arms above my elbows and around my rib cage. My question is to find out if this is normal to FMS or not. The arm cramps do not hurt usually, unless physically touched, but the charlie horses that are on my rib cage will sometimes knot up and I swear feel as though I am giving birth all over again. Any help or advice you can give me will be greatly appreciated. Thank you. YES CRAMPING AND SPASM IN MUSCLE IS COMMON IN FMS WE TREAT THIS WITH KUTAPRESSIN COMPLEX DEREK ENLANDER MD I was diagnosed with FMS just over a year ago, and since then I have done a lot of reading about it. But there is one thing that puzzels me, I have a low albumin level and high alpha- and beta-globulin levels in my blood. Gamma-globulin level is normal. Is there any association with MS or is it something else? Seen in a number of my patients but not considered a true indicator of FMS DEREK ENLANDER MD Dear Dr., I have an ANA 1:160 speckled, generally low wbc over 10 year period, recently had flare-up of flu-like symptoms, neck pain for 6 years, now low back pain, trembling right wrist/hand, and irritable bowel syndome with sleep problems. Recent tests results ESR 11mm/hr, CRP neg., hemo. 13.6, hct 40.8, plat. 294,SSA, SSB, RNP, anti- neg., CPK aldo. normal, thyroid normal, ds DNA 4. Doctor said I have fibromyalgia. Can you give me your opinion based on these facts? Thanks so much. He told me to read about it and come back in 6 weeks but offered no help at all for pain now! Thanks again, It is impossible to make a diagnosis without seeing the patient, however the speckled LE test must be explored to rule out LE or an autoimmune disease What about trigger point pain? or other physical findings? DEREK ENLANDER MD Nearly simultaneous to my diagnosis of FMS a few weeks ago, a chest xray and cat scan disclosed a lesion in my upper left lobe, and two slightly enlarged lymph nodes within the lobe. Six weeks later, a 3rd enlarged lymph node appeared outside the lung, near the windpipe. An initial bronchoscopy aimed at the lesion came back negative for cancer and fungous (or anything else specific), finding only a lot of very inflamed tissue. Most recently, a mediastinoscopy biopsy of the windpipe node, and a chamberlain biopsy of the lobe nodes were also negative for cancer. My surgeon said they'd been enlarged for a reason; they'd been doing a hell of a battle against something--possibly fungous. Their texture was said to be " granular, " almost calcified. Unfortunately, it is impossible to obtain a definitive biopsy of the lesion itself without removing the entire lobe, a course I'd prefer to avoid unless it is absolutely necessary. I have no independent symptoms of cancer. It has been suggested to me that the lesion in my lung is " fibrous scarring, " possibly the result of a (speculative) fungal infection. I have read that FMS (though " not debilitating " ) can cause or involve fibrous changes in tissue throughout the body -- including the " ropy strands " or " bands " related to pressure/trigger points, and around incision sites. Do you know whether this tendency also occurs in nonmuscular tissue? Could this be a sufficiently possible explanation for the lesion shown by the cat scan that I should weight its relevancy in forming my decision about having a lobectomy? Thank you so much for your site, and for you time. Martha These finding are not typical in FMS or CFIDS you must see an expert internist and/or oncologist to further define the lymphadenopathy. DEREK ENLANDER MD Hello Doctor, thank you so much for accepting my e mail. I have have been diagnosed with Fibromyalgia but I don't know if the severe dizziness I have is related or not. I have been told that it's due to my Irregular heartbeat, I have been told it's the arthritis in my neck due to a whip lash, and I have been told it's my imagination. The dizziness is 24/7, but it can cause so much trouble that I can't drive or walk very far. I get extremly nauseated. It feels as if the floor is moving, pens or pencils look crooked when I hold them and I tend to lean to the left when I walk. I am so depressed over this I get suicidal. Any help would be so very much appreciated. Thank you. Donnajean. SOME of your symptoms are related to FMS it is not in your imagination Patients with FMS can suffer from associated depression which is not the cause of the disease but rather the result of being chronically sick. DEREK ENLANDER MD Is there a connection between Fibromyalgia and vastly fluctuating BP? Is there research available on the subject? Thank you. If you believe as I do that there is a relationship between FMS and CFIDS then there is a body of knowledge relating to fluctuating Hypotension in CFIDS DEREK ENLANDER MD I would like advice on how do people keep there jobs with this fibromyalgia. I was told I have this 7yrs.ago and dealing with this disease and tring to keep my job has me so stressed out.I have electronic accupuncture done and also ultra sound treatments and massage therapy.That helps alot I also take Cellebrex and amitrityline at night to sleep with zanax.The cellebrex I have been on for 3wks. and it does help.Do you have any suggestion for me. I work on a assembly line in a car manufactory.They have family leave but they won't accept it because my Dr. cannot show them I have it There are no test that can prove I have it.So what I am asking is how do people keep there jobs with this disease.Thank-you for listening. The problem with this disease is two fold making the ddiagnosis and having people believe that the patient is suffering. You should go to a recognized expert and have a medical report confirming the diagnosis, we have patients travelling from all parts of The US and elsewhere to have the diagnosis made. We treat the diseaase with Kutapressin complex, neurontin, NADH and glutathione with reasonable result. DEREK ENLANDER MD Hi Doc, Dx. with fibro 6 yrs ago so have been through the ringer as most with Dr.'s. I have inflammation of the fascia,(feet) was told to stay off of them which I did for 60 days and had to quit my brand new job over it. Have used arch supports of all kinds, now taking Soma to relax muscles. Seemed it worked the 1st two weeks but now no relief. Have appt. with Podiatrist next wk. I'm not so sure I'm describing it correctly as no one has ever treated me correctly for this. I now have a job that requires driving (school bus) and now it's getting to the point where I can't hold my foot in that position over 5 min. The pain is in the ball, arch and heel. Any suggestions? Anything else you might suggest I be checked for? I want to have all my ducks in a row next wk. Is this something that would be possibly considered a disability? I'm in Mo. Thank you for your time, beth Plantar faciaitis is a painful inflamation of the fascia of the sole of the foot, it is not classically seen in FMS but a number of patients have this condition concomittantly. A foot specialist will treat this condition in association with your FMS specialist. This painful condition should be considered debilitating and should qualify for disabliity while it lasts. DEREK ENLANDER MD FIBROMYALGIA CFIDS CENTER NEW YORK Dr. Enlander will gladly answer your questions about Fibromyalgia To the archives of questions answered by Dr. Enlander page 1 page 2 current Return to Home Page Background from dr.enlanderonlinepg3 Archives, page 3 Dear DR. E. I just came across your column and have already learn't a great deal about fibro.It is a comfort to know that others experince some of the same discimforts as myself.Ihaven't read much about the magnets to help with blood flow and lessening some of the pain . Do you have any comments as to the benefits of using these?? Some well meaning friends have suggested I use them and I thought I would ask for your opinion of the use of them. I also suffer from RA for many years,and angina,hypothyroid and about 6 mons. ago my Rheu.DR. told me I also have this fibro.Any help and words of wisdom are deeply appreciated. Thanks for letting me talk to you and keep up the good work. Priscilla I have recently received two books. One from a patient a book relating to magnets: "Magnet Therapy- The Pain cure" by Lawrence and Rosch; and the other book "The Pain Relief " by Whitaker from a Magnet company. Both books claim that magnets somehow induce a pain reduction. I do not know how this effect can be explained or indeed if it is true. The side effects are minimal, no habituation, no nausea, no cross reaction with other medication. My attitude is usually sceptic, here scepticism is still present but as it seemingly can not do any harm it may be worth trying. The only harm is a worthless waste of money as the magnets are expensive. DEREK ENLANDER MD FMS CFIDS Center I am 45 years old- a former thyroid cancer patient-( 16v yrs ago). I was recently diagonosed with Fibromyalgia. I am also 125 lbs overweight. Obviously I know that losing weight would improve my overall health- and I am attempting a weight loss effort- is there any correlation between obesity and Fibromyalgia. I get very little support from my family because they believe all of my aches and pains are because of the obesity and nothing more. But all the literature I have read on Fibro- describes me. I often have a great deal of swelling in my ankles, and difficulty waling because my heels hurt so mucy. Is that fibro related.? Also in reading through your archives I understand that you suggest that when you do use pain medication you alter the kind you use so that you don't get used to any one kind. I currently need to take either a Vicodin, Darvocet or a Fiorcet at night to take the pain away at night to enable me to sleep. My pharmacist says that one pill per day is not addictive, yet my nuerologist is paranoid about giving me any pain medication whatsoever. So I play the game to obtain drugs ffrom between my family doctor, a psyciatrist, and the [rheumetolgost. Could you shed mor light on the use of pain medicaiton in pain management Mikki Pain is a great problem with FMS. Pain medication is carefully controlled by the DEA (a Government Department), a doctor can lose his licence to practice if the dept. considers he is prescribing too much pain medicine. There is a problem with most pain medicine, some patients can be habituated with even small doses. I tend to rotate pain medicine in an attempt to avoid this, and also to avoid the problem of getting used to a medicine and having to increase the dose to give the same effect. There is a new pain medicine Duradesic, a patch which is applied to the skin and lasts for 3 days, a number of patients have been helped by this. The drawback is that it is expensive. It needs a triplicate (DEA) prescription With regard to FMS and obesity, not all FMS patients are overweight, so there is no direct relationship. Obesity however can magnify some of the symptoms and you must lose weight, a severe weight lose program must be started under your doctors control. We have an exercise physiologist in our practice to monitor overweight patients and prescribe appropriate diet and exercise, too much exercise causes a setback. DEREK ENLANDER MD What is Kutapressant and how does it work for FMS? Thanks SS Let me start by saying we do not know why FMS occurs nor what causes it. Having professsed such ignorance now the subject is open to wide discussion. In my opinion the disease is a system wide, body wide, condition, not only certain muscles and trigger points are inflamed but a whole series of problems are manifest, from joint pain, inability to concentrate, short term memory loss to fatigue etc. If this system wide disease is inflamatory then the immune system is involved, the immune system is not recting normally. In order to mediate this we use kutapressin. Kutapressin has been used in other conditions to activate the immune system, it is a complex of amino acids derived fom liver amino acids. It is given in intramuscular injection weekly. We use it in combination with magnesium sulphate, folic acid, B12, calphosan and glutathione. Enlander MD FMS CFIDS Center If Kutapressant stimulates the immune system what would it do to someone who has thyroid problems. I have had thyroiditis since third week of Feb. I have heard I should avoid things like Ecanatia as it *might* stimulate the immune system and cause thyroid problems. Any thoughts of this? Thanks Shirley I can not with certainty answer this. Patients with Hashimotos autoimmune thyroiditis do not have problems. I would wait until the throiditis flare-up has passed DEREK ENLANDER MD I'm in the Army and in January '99 injured myself shooting video from a helicopter, which caused muscle spasm of my trapezious muscle of my right shoulder and turned into an inability to move my head in any direction, I could not lift my arm and had shooting pains in my median nerve and could not perform fine motor skills without much pain. Since that time, I have been in c-spine traction, doing muscle strengthning exercises for my right shoulder, and pool physical therapy, but the symptoms still persist and have moved to my left neck, back, shoulder, and hand as well. The Army doctors have put me on a exercise program limiting my acitivities to just walking for exercise and shortly there after I developed plantar fasciatis of both feet when previously I had only had it in one after breaking my right foot last May. Both legs hurt most of the time, It's a dull achy feeling and they feel so tired they don't want to walk and its a relief to sit but after a while that gets uncomfortable. I sometimes can feel the vibration of my car under my legs and its irritating. When I wake up in the morning it is not only difficult to walk right away but my shoulders are hunched and I feel like I've been beaten all night. I do have trigger points along my back, around my shoulder blades on both sides, But I've not been able to find any others in my body. I don't know where to look? Other places I hurt include the tops of my feet, the roof of my mouth (I get a spasm sometimes when I eat), I keep a headache in the front of my forehead and sometimes in the back of my head if I'm really tense. I have a sharp pain in my hip/butt but the worse thing is the tired,weak feeling I have all the time. In June, I have to go to a board for the Army doctors to decide If I'm fit for duty. I've not had to carry any weight on my back or a weapon or even the 35 pound television camera I'm supposed to carry to perform my job since the initial shoulder injury but my biggest concern is that no one seems to know what is going on with my body. I've had MRI (showed spasm), Bone Scan,( Arthritis of the hips, left worse than right and stress changes of both legs), Nerve test of right arm and hand, (mild carpal tunnel), the orthopedic doctor said that regular xray doesn't show anything alarming to him and that it sounds like classic lupus because I'm black, and my blood work, (Positive ANA-1/160) . I don't have any rashes or anything external and the things the doctors tell me don't justify the pains I have daily. Currently I'm on Tramadol and Sertraline and they help but they make me very sedated. The surgeon says I'm under a lot of stress and it will probably go away once they put me out because if I'm diagnosed with Fibromyalgia its not deemed a real disorder yet. Does it sound like fibro or could it be lupus in the beginning stages? I'm sorry to be so wording I'm trying to get as much information as I can before they boot me out of the Army with no medical insurance. It is obviously impossible to make this diagnosis without careful examination, The diagnosis of SLE (systemic lupus erythematosis) is crucial and has to be explored. This is a serious condition and must be careful explained by your physician. DEREK ENLANDER MD Dr. Enlander - Just found your website thanks to co-cure. I've had Fibro for 5 yrs. Heard tonight that our local doctor thinks that an anti-biotic commonly associated with curing acne can help people with fibro. Do you know anything about this, i.e. the name of it? Sounds like a Nobel prize winner, unfortunately I have not heard of this miracle. Enlander MD Dr. Enlander, Three years ago, when I was having classic symptoms of fms, but had not heard of it, I started with my Gynecologist as I was due for my yearly exam. I knew I felt lousy and it seemed a logical place to start. For the first time ever, I had an abnormal PAP. Because of the atypical glandular cells and atypical squamous cells that were (and are) present I have spent three years doing repeat smears, colposcopy, & biopsies. All the pathology reports are always normal and I'm told that there is "probably just some inflammation" causing this. In the meantime, continuing the fms symptoms, my G.P. referred me to a Rheumatologist who gave me fms info. and the diagnosis. Is it possible that the fms would trigger an inflammatory response that is continually showing up on a PAP smear? Thanks. R. If you believe as I do that there is a corelation between FMS and CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) then you may understand that the immune system can produce inflamatory response in various places muscle, joints, larynx, vagina, cervix etc. If a biopsy is taken a normal or non specific pattern is usually reported. We therefore treat the disease with a kutapressin complex. INTERFERON PROJECT At present we are enrolling patients in an interferon research project, patients who are interested in this project should contact us at enrollment takes place Thursday Mornings between 8 am-12 noon . DEREK ENLANDER MD FMS CFIDS Center New York Doctor, have had fibrimylagia for quite some time but, I have noticed that since I received 1 injection of Lupron for endometreosis, that my symptoms are much worse along with severe migraines. Do you have any suggestions for me that might help? Thanks for your time. And I pray that something will be done for this syndrome,if the people who do the research had this pain, I am sure they would try harder to find a cure!!!!!!!!!!!!! Thanks again, Sally I prescibe Duradesic patches for pain, the advantage is that the nausea is reduced thro the patch and the pain medicine is administered constantly over a peiod of three days. DEREK ENLANDER MD 8 years ago i was diagnosed with fms, over the last 8 years my symptoms were mild, and frankly i took discalcid , prescribed by a rheumotoligt 1 or 2x a day, over the counter meds to sleep, and took a lot of tylenol and vitamins. the mild episodes were tolerable and frankly I forgot what heavy duty fms was like. I had a bad case of the flu this year and was taking antibotics 3 different times and no relief from the flu. suddenly I had a bad neck and arm problem that no one could figure out what the problem was, suddenly I started with all the old fms symptoms heavy duty, pains all over, iritable bowel sym., headaches, depression and anxiety. It was a miracle I picked up an old book on fms and sure enough, I figured out it was fms. I had a cortisone shot in my shoulder but the radiatiing pain down into my left arm with burning that is unbearable. I was spoiled for 8 years and now that the pain is so severe, I get scared. Is this normal to happen after the flu, because thats the only thing that makes sense to have brought on this episode of fms. I need a good list of rheumotolgist in South Florida. Thank you in advance. Bubbly YOU ARE SUFFERING FROM A FMS RELAPSE . This frequently occurs after physical or mental stress, the stress may be an infection or it may be another stressful episode. I have no referral to send you to in Florida. DEREK ENLANDER MD FMS CFIDS Center New York editor's note: Email Masaathoff@... with your inquiry and personal info and she will snail mail you information about doctors in your area. Anyone may contribute information about doctors that they have seen and also information about support groups. I was diagnosed with fibro. 7 years ago, along with the chronic fatigue. I have severe scoliosis, osteoporosis, degenerative arth. of the spine, focal seizures since 1991, and in November I was put on oxygen for fibrosis of the lungs. It seems my energy level is even lower. The chronic fatigue was bad but had seemed to sort of level off--not spending entire days in bed because I was so tired I could do no better. I had to quit my job as office manager when I was diagnosed with FMS and CFS. My question is why do I feel so much fatigue? My doctor can't seem to answer this--other than weather changes affect us, etc. All my blood levels are fine. He did check this. Thanks, Anita Fatigue is common in both FMS and CFIDS, it is an immune system disease, possibly caused by one or more of five viruses, the viruses that have been implicated at various times are EBV, CMV, HHV6, ackie B, and a retrovirus. Have your doctor check for these . Enlander MD I have had FMS for 13 years . I walk and ride my bike for exercise and always stretch before. I have a Pool that can be used in summer, but winter brings on problems. Exercise definitely helps ! I work full time plus ....owning my own business. I have recently gone to the gym ...trying to work with weights to stregthen my muscles. I was very sore and ached for a couple of days, although I did continue to walk. Is weight training out of the question for FMS patients? I am 47 years old and a little overweight ...after losing the weight i gained at the beginning of FMS ...all the mixed meds I was on was unbelievable. I take Elavil 20 mg at night and for pain advil or small dose of darvacet. I still have a lot of pain ..I have learned to deal with it ....listening to my body, when it needs rest etc. I am a Hairstylist..and it causes pain in my neck, arms, hands etc. I am really worried about my muscle mass ...can you help me with some exercises to help? Thank you so much ..Sherry I have an exercise physiologist who works in my office, he suggests that you contact your doctor to put you in touch with an exercise physiologist who will work with your doctor. Light weight is in order, excessive exercise will produce a relapse. DEREK ENLANDER MD Dear Dr Enlander, I am a 27 year old woman with Fibromyalgia, Reflex sympathetic Dystrophy, & Asthma currently living abroad with my husband who is in the military. While I am doing well on my medications & have adapted my daily life to help with my conditions, I am now gathering information to submit with a request for ground level government quarters to our base housing office. Stairs have always been a very big aggravator to my symptoms, not only with the normal walking up & down, but with carrying groceries, etc. I have a 2 year old child & know full well what the ramifications of being unable to walk up & down stairs can have not only on my physical well-being, but the emotional well-being if left housebound. I have found that even in the worst of pain, the ability to sit outside in the sun can help. I have once been housebound for several months, and found that the emotional tole it added increased my pain. I forgot to mention my symptoms are full-body from the neck down, and I have been coping with this for 14 years. Stairs have always been a problem for me, increasing my pain & increasing symptoms. Any information you can provide to help in our request for ground level housing would be highly appreciated! Thank you! I sympathize with your pain and suffering. You must enlist ( to coin a phrase militarily) a specialist to submit a report on your behalf enumerating the problems both medically and socially. We have done this with effect on numerous occassions. DEREK ENLANDER MD My doctor just told me that I have fibromyalgia. I was in an accident in sept. and since them I have had pain everywhere, can't sleep, Cant remember things and just dont feel right. Well my doctor said I had to increase my serotonin level. He said I have serotonin depletion syndrome because of fibromyalgia. Have you ever heard of that? He has me on Paxil 20mg and every 4 days I increase a pill all the way up to 6 pills a day. I would like to know if you think its safe and have you every heard if it helps? Thanks We do not know if serotonin is the active factor in FMS Many patients are treated with an adjunct of Paxil, which does act on brain serotonin and assists in the depression which frequently accompanies FMS, however the dose you mention is larger than that commonly used. DEREK ENLANDER MD I believe fully in alternative medicine. For the last two years, I have been taking 1,000 mg. to 3,000 mg. of ma huang and 3,800 mg. of guarana seed daily. My body looks great. But I have major mood swings, depression at times, and infections. Is this from the ma huang? Some herbs are potent and life threatening. Just because a herb is called a herbal remedy it is not necessarily safe and innocuous. Ma huang (herbal ectasy, or Ephedra sinica) originally comes from the Far East; Mongolia, China and India. A synthetic version of ma huang is the active ingredient in the decongestant,Sudafed, The herb must be carefully used . In high dosages, ma huang suppresses the appetite. As a result, it's commonly misused in the West as a stimulant or for weight loss . There are documented deaths attributed to overdoses of ma huang. In high doses, Ephedra sinica can cause lethally high blood pressure and cardiac rhythm disorders. Even in normal doses, it can cause headache, irritability, restlessness, nausea, insomnia, heart rhythm problems, urinary retention and vomiting. Its effect in the body is similar to adrenalin, only longer acting. The herb is known to cause dependence. The body will become resistant, and you'll need to take more to have the same effect. Ma huang may have serious, life-threatening cross-reactions with conventional medicine. Guarana, is derived from a climbing Amazon jungle vine, the seeds are loaded with caffeine like drug . High doses can cause rapid heartbeat, elevated blood pressure, vomiting and abdominal spasms. It is traditionally used only as a tonic. Can be toxic high doseage. Again be careful with taking any drug whether it is a prescription or a herb both can lead to addition or cross reaction., DEREK ENLANDER MD Hi, I live in Auckland, New Zealand. I have been diagnosed with FMS and have had blood tests recently which leave me confused about my diagnosis. The positve ones were ANA 1250, and CRP 10. These results have been consistant and other tests for lupus,arthritis were negative. I have also had episodes of protein and blood in my urine (not high levels) and developed an unusual pain in my left side at kidney level a year ago. Is there any other condition I should be checked for as I believe there are no positive tests for FMS. I would reccomend that you see a specialist in SLE, systemic lupus erythematosis, to rule in or out that diagnosis, the protein in urine is not common in FMS Enlander do you take medicare patients? someone is asking me...... linda Yes we accept Medicare DEREK ENLANDER MD Haven't tried Kutapressin as I'd heard it's bovine and I'm allergic to beef. I've also heard it's porcine. Could you look at the label and see which it is, please? It's porcine as pig liver is more akin to human amino-acid makeup ..DEREK ENLANDER MD Dear Dr., Is it common for fibromyalgia patients to get adhesions more than those who do not have fibromyalgia? I had a ruptured ovarian cyst when I was 26 and have had two more major surgeries to correct the horrid pain caused by massive adhesions affecting ALL of the pelvic organs and I am still having problems at 47. I have had fibromyalgia for a very long time. Thanks, THERE IS NO EVIDENCE OF INCREASED POST SURGICAL ADHESIONS DEREK ENLANDER MD FMS CFIDS Center New York Dear Doctor, I have been suffering from Fibromyalgia for the past eight years. I also am suffering from Meniere's disease of the inner ear. Is there any correlation between the two disease processes? No although FMS patients can have inflamation in the auditory nerve that simulates Meniere's disease DEREK ENLANDER MD I have a severe case of FMS, and also have ovarian cysts. I can have surgery and have my ovaries removed. I have been putting it off, afraid that surgery will worsen my FMS. Do you think it will take me longer to recuperate from the surgery? Do you believe having FMS will cause me more pain then the average patient? SURGERY AND ANESTHESIA FREQUENTLY CAUSES A RELAPSE IN FMS WITH A PROLONGED RECUPERATION DEREK ENLANDER MD Dear Doctor, I have been diagonesed with Fibro for about five years. What I would like to know is if there is a connection between my Fibro and Granuloma annulare. I have had this skin condition as long as I have had my Fibro. It is on my arms, hands, and chest. I have researched this condition and can find very little about it. Any info would be greatly appreciated. Thank-you Ruth . There is no known relationship DEREK ENLANDER MD I was diagnosed with Fibromyalgia well over 6 years ago and have been given several different meds to help the condition since that time, all of them bringing very little or no relief whatsoever. I have a new problem and would like some advice - recently I have noticed that I have "permanent" charlie horses (cramps) in my arms above my elbows and around my rib cage. My question is to find out if this is normal to FMS or not. The arm cramps do not hurt usually, unless physically touched, but the charlie horses that are on my rib cage will sometimes knot up and I swear feel as though I am giving birth all over again. Any help or advice you can give me will be greatly appreciated. Thank you. YES CRAMPING AND SPASM IN MUSCLE IS COMMON IN FMS WE TREAT THIS WITH KUTAPRESSIN COMPLEX DEREK ENLANDER MD I was diagnosed with FMS just over a year ago, and since then I have done a lot of reading about it. But there is one thing that puzzels me, I have a low albumin level and high alpha- and beta-globulin levels in my blood. Gamma-globulin level is normal. Is there any association with MS or is it something else? Seen in a number of my patients but not considered a true indicator of FMS DEREK ENLANDER MD Dear Dr., I have an ANA 1:160 speckled, generally low wbc over 10 year period, recently had flare-up of flu-like symptoms, neck pain for 6 years, now low back pain, trembling right wrist/hand, and irritable bowel syndome with sleep problems. Recent tests results ESR 11mm/hr, CRP neg., hemo. 13.6, hct 40.8, plat. 294,SSA, SSB, RNP, anti- neg., CPK aldo. normal, thyroid normal, ds DNA 4. Doctor said I have fibromyalgia. Can you give me your opinion based on these facts? Thanks so much. He told me to read about it and come back in 6 weeks but offered no help at all for pain now! Thanks again, It is impossible to make a diagnosis without seeing the patient, however the speckled LE test must be explored to rule out LE or an autoimmune disease What about trigger point pain? or other physical findings? DEREK ENLANDER MD Nearly simultaneous to my diagnosis of FMS a few weeks ago, a chest xray and cat scan disclosed a lesion in my upper left lobe, and two slightly enlarged lymph nodes within the lobe. Six weeks later, a 3rd enlarged lymph node appeared outside the lung, near the windpipe. An initial bronchoscopy aimed at the lesion came back negative for cancer and fungous (or anything else specific), finding only a lot of very inflamed tissue. Most recently, a mediastinoscopy biopsy of the windpipe node, and a chamberlain biopsy of the lobe nodes were also negative for cancer. My surgeon said they'd been enlarged for a reason; they'd been doing a hell of a battle against something--possibly fungous. Their texture was said to be "granular," almost calcified. Unfortunately, it is impossible to obtain a definitive biopsy of the lesion itself without removing the entire lobe, a course I'd prefer to avoid unless it is absolutely necessary. I have no independent symptoms of cancer. It has been suggested to me that the lesion in my lung is "fibrous scarring," possibly the result of a (speculative) fungal infection. I have read that FMS (though "not debilitating") can cause or involve fibrous changes in tissue throughout the body -- including the "ropy strands" or "bands" related to pressure/trigger points, and around incision sites. Do you know whether this tendency also occurs in nonmuscular tissue? Could this be a sufficiently possible explanation for the lesion shown by the cat scan that I should weight its relevancy in forming my decision about having a lobectomy? Thank you so much for your site, and for you time. Martha These finding are not typical in FMS or CFIDS you must see an expert internist and/or oncologist to further define the lymphadenopathy. DEREK ENLANDER MD Hello Doctor, thank you so much for accepting my e mail. I have have been diagnosed with Fibromyalgia but I don't know if the severe dizziness I have is related or not. I have been told that it's due to my Irregular heartbeat, I have been told it's the arthritis in my neck due to a whip lash, and I have been told it's my imagination. The dizziness is 24/7, but it can cause so much trouble that I can't drive or walk very far. I get extremly nauseated. It feels as if the floor is moving, pens or pencils look crooked when I hold them and I tend to lean to the left when I walk. I am so depressed over this I get suicidal. Any help would be so very much appreciated. Thank you. Donnajean. SOME of your symptoms are related to FMS it is not in your imagination Patients with FMS can suffer from associated depression which is not the cause of the disease but rather the result of being chronically sick. DEREK ENLANDER MD Is there a connection between Fibromyalgia and vastly fluctuating BP? Is there research available on the subject? Thank you. If you believe as I do that there is a relationship between FMS and CFIDS then there is a body of knowledge relating to fluctuating Hypotension in CFIDS DEREK ENLANDER MD I would like advice on how do people keep there jobs with this fibromyalgia. I was told I have this 7yrs.ago and dealing with this disease and tring to keep my job has me so stressed out.I have electronic accupuncture done and also ultra sound treatments and massage therapy.That helps alot I also take Cellebrex and amitrityline at night to sleep with zanax.The cellebrex I have been on for 3wks. and it does help.Do you have any suggestion for me. I work on a assembly line in a car manufactory.They have family leave but they won't accept it because my Dr. cannot show them I have it There are no test that can prove I have it.So what I am asking is how do people keep there jobs with this disease.Thank-you for listening. The problem with this disease is two fold making the ddiagnosis and having people believe that the patient is suffering. You should go to a recognized expert and have a medical report confirming the diagnosis, we have patients travelling from all parts of The US and elsewhere to have the diagnosis made. We treat the diseaase with Kutapressin complex, neurontin, NADH and glutathione with reasonable result. DEREK ENLANDER MD Hi Doc, Dx. with fibro 6 yrs ago so have been through the ringer as most with Dr.'s. I have inflammation of the fascia,(feet) was told to stay off of them which I did for 60 days and had to quit my brand new job over it. Have used arch supports of all kinds, now taking Soma to relax muscles. Seemed it worked the 1st two weeks but now no relief. Have appt. with Podiatrist next wk. I'm not so sure I'm describing it correctly as no one has ever treated me correctly for this. I now have a job that requires driving (school bus) and now it's getting to the point where I can't hold my foot in that position over 5 min. The pain is in the ball, arch and heel. Any suggestions? Anything else you might suggest I be checked for? I want to have all my ducks in a row next wk. Is this something that would be possibly considered a disability? I'm in Mo. Thank you for your time, beth Plantar faciaitis is a painful inflamation of the fascia of the sole of the foot, it is not classically seen in FMS but a number of patients have this condition concomittantly. A foot specialist will treat this condition in association with your FMS specialist. This painful condition should be considered debilitating and should qualify for disabliity while it lasts. DEREK ENLANDER MD FIBROMYALGIA CFIDS CENTER NEW YORK Dr. Enlander will gladly answer your questions about Fibromyalgia To the archives of questions answered by Dr. Enlander page 1 page 2 current Return to Home Page Background from Quote Link to comment Share on other sites More sharing options...
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