
Reply: Where did I go
I know how you feel and I understand your pain. Like you, I was always very...
Posted by crystalgreeneyes
I know how you feel and I understand your pain. Like you, I was always very active, I had a great job and was making a lot of money. At the weekends I would go out dancing with my sister, entertain, cook, clean and exercise daily. At age 54 I went back to school (the pain was beginning around then) but I just thought it would go away. I excelled in my course and was the top honour student. Now it is a year later and my dreams of opening my own business and doing what I trained so hard to do, have turned to dust and blown away with every other piece of my life that I used to enjoy. I don't work at all. My pain is mostly all in my back, my elbows and here and there at other times. I get headaches a lot. Like you, I am also very sensitive to medication and I cannot take anything for the relentless pain because it either makes me extremely sick, or makes my pain worse, in addition to what other side effects there may be. If they have them, I experience them. I take sleeping pills and anti-anxiety medication because at least I have to sleep and even they bother me to some degree.
You have cut gluten and sugar; they bother me too. Try a compounding pharmacy to see what ingredients may be effecting you and they will try to find supplements that you may be able to take. The Vit D I was taking had palm oil and that was apparently the cause of my extreme nausea.
I have so much fear, for the future, it is very scary. I don't know what will become of me and I don't know what to do.
I suggest a naturopathic dr., a counsellor, other support in your community.. this is very important. The chiropractor with training in neurology (this is related) will help with your pain and your anxiety. It's hard work; you keep hoping for someone, something that will help but you just have to keep on trying. I have a social worker who will accompany me to the dr. as my advocate because she can clearly see how much I am struggling. Sometimes we want to give, many days we cry.
Keep looking..it wears you out but there is chiro. massage, myofascial release technique, acupuncture, trigger point injection. special diet and exercise programs (heated pool) I can't afford most of this myself but if you are able to try some of these things, please do It is daily struggle. In the first few years especially we can be very angry at a life taken away from us. Please be strong.View Thread
Posted bycrystalgreeneyes
You have cut gluten and sugar; they bother me too. Try a compounding pharmacy to see what ingredients may be effecting you and they will try to find supplements that you may be able to take. The Vit D I was taking had palm oil and that was apparently the cause of my extreme nausea.
I have so much fear, for the future, it is very scary. I don't know what will become of me and I don't know what to do.
I suggest a naturopathic dr., a counsellor, other support in your community.. this is very important. The chiropractor with training in neurology (this is related) will help with your pain and your anxiety. It's hard work; you keep hoping for someone, something that will help but you just have to keep on trying. I have a social worker who will accompany me to the dr. as my advocate because she can clearly see how much I am struggling. Sometimes we want to give, many days we cry.
Keep looking..it wears you out but there is chiro. massage, myofascial release technique, acupuncture, trigger point injection. special diet and exercise programs (heated pool) I can't afford most of this myself but if you are able to try some of these things, please do It is daily struggle. In the first few years especially we can be very angry at a life taken away from us. Please be strong.View Thread
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Reply: Pain after eating whole body tried to end life
I understand what you are experiencing. I also experience pain after eating. I...
Posted by crystalgreeneyes
I understand what you are experiencing. I also experience pain after eating. I have restricted so many items from my diet at this point that I barely know what to eat any more. Frankly, I feel better when I don't eat anything. Obviously, this is not a good thing.
I do know this however, and perhaps it is something that you have been told but anxiety and stress will also increase your pain and cause nausea as well. I ate a piece of chocolate cake at my daughter's grad. and afterward I was in so much pain, I was in tears and nothing would alleviate this pain. But, I feel that there was something in that cake that caused the pain. Now I avoid sugar, gluten (in many products) MSG, and nightshades (tomatoes, red peppers etc.) Recently I went to a compounding pharmacist who told me that I was highly sensitive to palm oil which was in the Vit. D drops I was taking. When I switched to another brand, I had no problem.
This sounds simple and you have said you have tried various diets. Have you been to see a naturopathic doctor? I know they can be very thorough and will investigate much more than your family dr. likely will. I would go to one myself but they are expensive and I can't afford it at this time.
I started going to a chiropractor as well and I am noticing some improvement. Hippocrates, the Father of Medicine said, "For all disease, look to the spine".
I hope you find help. I have been where you are and have done the same thing in desperation. I have a caseworker coming to my dr's appt. with me next week as an advocate because she can clearly see how much I am struggling with finding the right help.
Take care. I wish you well.View Thread
Posted bycrystalgreeneyes
I do know this however, and perhaps it is something that you have been told but anxiety and stress will also increase your pain and cause nausea as well. I ate a piece of chocolate cake at my daughter's grad. and afterward I was in so much pain, I was in tears and nothing would alleviate this pain. But, I feel that there was something in that cake that caused the pain. Now I avoid sugar, gluten (in many products) MSG, and nightshades (tomatoes, red peppers etc.) Recently I went to a compounding pharmacist who told me that I was highly sensitive to palm oil which was in the Vit. D drops I was taking. When I switched to another brand, I had no problem.
This sounds simple and you have said you have tried various diets. Have you been to see a naturopathic doctor? I know they can be very thorough and will investigate much more than your family dr. likely will. I would go to one myself but they are expensive and I can't afford it at this time.
I started going to a chiropractor as well and I am noticing some improvement. Hippocrates, the Father of Medicine said, "For all disease, look to the spine".
I hope you find help. I have been where you are and have done the same thing in desperation. I have a caseworker coming to my dr's appt. with me next week as an advocate because she can clearly see how much I am struggling with finding the right help.
Take care. I wish you well.View Thread
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Reply: Newly Diagnosed
Sorry to hear of your situation. In one so young it is so disheartening. You found...
Posted by crystalgreeneyes
Sorry to hear of your situation. In one so young it is so disheartening. You found someone who was able to give you a diagnosis and that's a start. If you are very sensitive to drugs or even supplements, etc., I advise you to go to a compounding pharmacy. I went there recently to see if I could find out why Vit. D drops were making so sick. Apparently, the brand I was using has palm oil (the culprit) and the pharmacist suggested I try another brand after doing a simple test. He also told me that if I still had a reaction I could bring it back and he would continue to find one that won't have adverse effects.
I am not taking anything for pain because of the intolerance I have but I think if I work with this pharmacist and my dr., we may be able to devise a plan that works. I will post on my progress after seeing my dr. next week.
Take care. You need support so don't hesitate to find a counsellor or someone to assist you with all these issues. Sometimes we need an advocate because of the difficulty that can arise from trying to explain, to have the understanding of others, and simply to have someone to care.View Thread
Posted bycrystalgreeneyes
I am not taking anything for pain because of the intolerance I have but I think if I work with this pharmacist and my dr., we may be able to devise a plan that works. I will post on my progress after seeing my dr. next week.
Take care. You need support so don't hesitate to find a counsellor or someone to assist you with all these issues. Sometimes we need an advocate because of the difficulty that can arise from trying to explain, to have the understanding of others, and simply to have someone to care.View Thread
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Reply: One sided pain
Hi. You will find many "alwayshurting" people here. Sorry to hear you have this...
Posted by crystalgreeneyes
Hi. You will find many "alwayshurting" people here. Sorry to hear you have this possible diagnosis. A number of years ago I fell off a loft (about 10-12') I landed on my back and I was very bruised but did not break anything. This however, was a major trauma to my body and subsequently after a hospital stay and a million tests, the result was fibromyalgia. That was 1 1/2 years ago although I think I had it long before. Trauma of many forms can cause this condition and you mention an accident. All my pain is on my right side, mostly my upper back, neck, around my ribs and sometimes my elbows. The pain can be anywhere as it does tend to move around. Husbands can be difficult with this diagnosis. Mine does not support me at all and this can be a problem. I have sensitivity with medication too so I don't even have the relief of that. My advice is find the right dr. who will send you to the appropriate specialists. You may need to see a rheumatologist, a pain specialist, neurologist, chiro etc.It is tough but I urge you to persevere, fight and learn what you can so you can work with drs and other support people. Counselling can be useful for the emotional issues that often occur. Watch your diet - gluten, sugar, preservatives and chemicals can contribute to your pain. It's not the same for everyone of course, but hopefully you will find the way that works best for you soon. Being in constant pain and having little or no support and dealing with an illness that is somehow "not real" to many people including doctors, can lead to depression. You don't want anything to be wrong but somehow when all the tests come back normal you are left wondering what it is all about.
You will find very good support here. Ask lots of questions, make lists and try to exercise. I wish you well and feel so badly for everyone that has to endure this.View Thread
Posted bycrystalgreeneyes
You will find very good support here. Ask lots of questions, make lists and try to exercise. I wish you well and feel so badly for everyone that has to endure this.View Thread
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Drug sensitivity and compounding pharmacist
I have talked here about my sensitivity to medications, certain foods and other...
Posted by crystalgreeneyes
I have talked here about my sensitivity to medications, certain foods and other chemicals. Pain meds that have increased my pain, others that cause nausea, dizziness, headache and so on. I kept bringing up this issue with my dr. but without making any progress. Recently I spoke to an acquaintance (in health care) who told me that people are necessarily sensitive to the actual drug but specifically the additional components that are added in there, such as fillers and other chemicals for colour etc.
She suggested that I visit a compounding pharmacist where he/she will modify the drug to a level that is more tolerable for a particular patient. I have only had this reaction to drugs since being diagnosed with fibro. Vit D makes me feel extremely nauseated so I stopped taking it although I am aware of it's benefits for those with this condition. I have read about people here who have this problem as well. This may be a solution for you and is certainly something I am going to look into. Fortunately, there is a pharmacy like this in my area. My best wishes to everyone who is struggling with the many debilitating effects of FMView Thread
Posted bycrystalgreeneyes
She suggested that I visit a compounding pharmacist where he/she will modify the drug to a level that is more tolerable for a particular patient. I have only had this reaction to drugs since being diagnosed with fibro. Vit D makes me feel extremely nauseated so I stopped taking it although I am aware of it's benefits for those with this condition. I have read about people here who have this problem as well. This may be a solution for you and is certainly something I am going to look into. Fortunately, there is a pharmacy like this in my area. My best wishes to everyone who is struggling with the many debilitating effects of FMView Thread
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Reply: Immunizations Caused My Fibromyalgia and Pituitary...
There is certainly a lot going on here. I believe this but no one else dismisses...
Posted by crystalgreeneyes
There is certainly a lot going on here. I believe this but no one else dismisses my theory. I had sore legs for months and I was very tired. I had to quit my job because I could barely walk. I had red blotches on my knees and my calves were very sore. My knees were swollen, my elbows and my fingers. This went on for months. I was in the hospital for a month while they tried to determine what the problem was. After some time I told them that I had received the first two of the injections for Hep B and all these symptoms presented following that. They insisted it wasn't the cause. They finally called it transient hepatitis and a virus with acute arthritic flare up.I have never been the same since. Gravol is a common anti nauseant (OTC) that cause my pain to be intense. This happens with antibiotics, Tylenol of any kind etc. Lately, I have discovered vit d drops make me extremely sick. I have tried all those drugs with no success. Cymbalta, Lyrica etc. what a nightmare. I can't even take a Vit. What am I supposed to do for pain and sleeping. There is no case of fibro in my family anywhere.View Thread
Posted bycrystalgreeneyes
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Reply: Vitamin D..extreme nausea and pounding headache
Hi Mimi. Thank you. I know you are a great proponent of Vit. D. I am positive the...
Posted by crystalgreeneyes
Hi Mimi. Thank you. I know you are a great proponent of Vit. D. I am positive the reaction is from it. I stopped after a couple of days - the nausea subsided, I took it again and the nausea started right back up. No she didn't check it, she didn't even examine me except to check my hands for swelling.
I could try another brand. Vitamins and supplements are very expensive here and cannot be returned. I react to so many drugs, even anti-nausea causes my pain to increase. No one addresses this hypersensitivity or tells me what I can do about it. All my complaints are lumped together with fibro and nothing is further investigated. I am so sick and tired of all of it.View Thread
Posted bycrystalgreeneyes
I could try another brand. Vitamins and supplements are very expensive here and cannot be returned. I react to so many drugs, even anti-nausea causes my pain to increase. No one addresses this hypersensitivity or tells me what I can do about it. All my complaints are lumped together with fibro and nothing is further investigated. I am so sick and tired of all of it.View Thread
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Vitamin D..extreme nausea and pounding headache
I talked here about the rheumatologist I saw who does not treat fibromyalgia. I...
Posted by crystalgreeneyes
I talked here about the rheumatologist I saw who does not treat fibromyalgia. I should not have assumed that they all do. She did mention Vitamin D as have many of you here. I told her that I was very sensitive to drugs of any kind, including vit. supplements and she suggested I try Vit. D drops. I took it in the morning with my breakfast. A couple days later I started to experience very extreme nausea and my head was really pounding. I am trying to do what is advised and yet everything I take causes some or all of the following: headache, nausea, dizziness, decreased appetite or increased appetite, insomnia and so on. Some meds that I have tried that are supposed to help with sleep make me wide awake.
I know Vit D has many benefits for mood and stress but on top of everything else, pain, insomnia, fatigue - I cannot stand this awful nausea as well. I don't take anything for pain. Will this effect subside after a while. What to do? I don't know anymore.View Thread
Posted bycrystalgreeneyes
I know Vit D has many benefits for mood and stress but on top of everything else, pain, insomnia, fatigue - I cannot stand this awful nausea as well. I don't take anything for pain. Will this effect subside after a while. What to do? I don't know anymore.View Thread
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Rheum. Dr. doesn't treat fibro. thanks for your re...
Thanks to everyone that replied to my post about the specialist to whom I went...
Posted by crystalgreeneyes
Thanks to everyone that replied to my post about the specialist to whom I went only to find she does not treat fibromyalgia. I go to my family dr. every month. It's the same thing. I have to ask to be referred to specialists - only one at a time and often I have to wait months to see someone as I did with the last one. I live in a fairly small community and there's very few doctors taking new patients. It is difficult for me to drive very far away and try to find someone else. I have been to several already. My experience is that I am dismissed very quickly with a script for anti-depressants. When I say that I am very sensitive to medication side effects then it appears that they cannot do anything. I am not the only person to be sensitive to medication, surely? Is that their cue to give up on a patient? I try to be positive, I exercise and I watch my diet and I am seeing a chiro. 2 times a week. My anxiety and insomnia issues are bothering me the most at this time. I take sleeping pills and anti-anxiety meds. The sleeping pills allow me to sleep for an average of 3 hours and they do cause nausea to some degree. The AA med. calms me down and helps me to sleep as well but it doesn't settle my thoughts and if I take any additional of those (when I am really stressed) I become very depressed and tearful. My frustration is not helping I know but I seem to be going around in circles and getting no where. Lately I have been experiencing an intense recurring headache (every 3 weeks) which is not a migraine. It lasts for 3-4 days. I have gone to the dr. with this feeling that it is sinus related. He suggested antibiotics which I have terrible side effects with as well and I refuse to take them until I know whether or not it is an infection. I am seeing a new GP on Wed. Please help me prepare for this appt. Even if I make notes I forget important things. (I don't have anyone to accompany me) First of all I should ask "do you treat fibromyalgia?"
Because I am not working I don't have extra money for therapy. I could see a psychiatrist for free but they only prescribe medication.View Thread
Posted bycrystalgreeneyes
Because I am not working I don't have extra money for therapy. I could see a psychiatrist for free but they only prescribe medication.View Thread
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Rheumatologist tells me, "I don't treat fibromyalg...
I waited 3 months for an appt. with this specialist whom I was told was excellent....
Posted by crystalgreeneyes
I waited 3 months for an appt. with this specialist whom I was told was excellent. This was for a second opinion. In comparison the first one I saw is actually better. I had my list of notes and she did not give me a chance to elaborate on anything, just asked a few questions and typed on her laptop. She then went on to tell me that she did not treat fibromyalgia, only inflammatory diseases?? She had the door open after about 10 mins. Unfortunately, I often find (due most to fibro.) that I don't say things I want to say at the time that they are important and it all comes to me afterward. I cried, yelled and screamed all the way home. There was no one with me to see this meltdown thank goodness.
I have this awful fear and anxiety all the time. What kind of a life sentence is this? Living with constant pain, anxiety, insomnia etc.etc. The doctor told me that because I am so sensitive to medications, that I will have to rely on on other methods, exercise, water therapy and so on. I was considering have the cortisone injection but now I am so afraid of the possible side effects, I don't want to risk it. What now?View Thread
Posted bycrystalgreeneyes
I have this awful fear and anxiety all the time. What kind of a life sentence is this? Living with constant pain, anxiety, insomnia etc.etc. The doctor told me that because I am so sensitive to medications, that I will have to rely on on other methods, exercise, water therapy and so on. I was considering have the cortisone injection but now I am so afraid of the possible side effects, I don't want to risk it. What now?View Thread
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