I have way too many diagnosis. swam in polluted end of gene pool (think marshes after BP oil spill in the gulf) Mine include severe early onset osteoarthritis, fibro, two autoimmunes, allergic to everything, movement disorder including tremor, and much more.
maintaining quality of life is a challenge. one kicking in sets off chain reaction. where I am right now.
I eat clean, live clean, work on stress as much as possible. learned to say no to anything too taxing or not wanting to do. learning to love self as much as others.
I can assure, you're not alone. I know how you feel, I feel the same way. I have uncontrollable seizures, tremors, cervical dystonia, anxiety, short term memory loss, weakness in both of my legs, balance problems, and constant vertigo (dizziness). That's most of them anyway. My problems are a result of brain damage I got from radiation I needed to fix an AVM in my brain. Prior to that the only problem I had was seizures, which was kept under control by medicine. Now, I can't take anything for them - they don't work for me.
Have you tried a seizure med for your movement disorder? The dr. I saw for my problem with this tried me on a few but, I got bad side effects from them. You may not.
Count me in, like others I have more than one medical condition, on last count I think it was 5-6 and of course about 70% of the fibro symptoms. Find the accompanying FATIGUE, loss of balance, dizziness , weakness, Gastro problems, and pain that go with a number of them the most challenging. Some days are a major challenge but others are good. Live for the good days and enjoy everything I can…
I agree with you B2chi, I think the pain is the worst of my symptoms too. Probably because it's always there and it messes up my sleep schedule. I need a good nights sleep and it doesn't happen very often. We all know that isn't good for any of us.
I like your outlook: "... enjoy everything I can". The key word being "can". I feel the same way. Like many others, I take full advantage of my good days. Well,.. good for me anyway. All of my friends and neighbors can tell when I'm having a 'better day' -- I'm a lot more active. I usually pay for it the next day but, I don't mind. That sounds ironic, doesn't it? I live alone, so on my good days and I'm able to get things done around my house. In the summer, I like to work outside (around the house). It gives me a good feeling knowing that I accomplished something (smile). So,.. I don't mind paying for it the next day as long as I had a good productive day before it. I'm pretty sure you know what I mean by that.
I HAVE SCOLIOSIS MARFAN HABITUS HYPOTHYROID FIBROMYALGIA.I DONT KNOW WHATS CAUSING THE PROBLEM .I. NOW HAVE A FIRST TIME BAD SINUS INFECTION WITH COUGHING DIFFICULTY BREATHING CHEST HURTING.IVE TAKEN AUGMENTINE PREDNISONE PRILOSEC DULERA AND ROBITUSSINE WITH CODEINE.I WISH I COULD TAKE Z PACK BUT IT AFFECTS MY HEARTBEAT.ITLL BE 4 WEEKS ON SUNDAY JAN 12.HOPE ALL THE FIBROGANG THWT CANT SLEEP CAN SLEEP.GOOD LUCK.
I’m new at this site so just bare with me. Count me in to the multiple diagnosis. FM, IBS, Celiac, vision troubles, dizzy spels, low blood suger, herniated disc, restless legs, artiritis in my fingers, allergies and chemicaly sensitive. On top of that, my three kids have FM and my husband (my soul mate) passed away 18 days ago. I’m so depressed and lonely, I could just die. I took care of him the last few weeks. He was diagnosed with Parkinson’s in 2008 and theated for that. He actualy had kidney disease and they never picked it up. He died at home while I was holding his hand. Now the FM has realy set in. I’m so tired and in pain and lonely. He understood my pain. He helped me where he could and he took pitty on me. Now he is gone.
Hi JaLo, my heart goes out to you the loss of your mate just 18 days ago makes me realize that my problems are much more manageable I hope that you have friends and family that can help support you through this. I know they can never replace your husband but you obviously need some assistance looking after yourself. This site is a great place to find friends, information on fibro, support and encouragement. Please treat yourself well,
Gentle Hugs
B2chi
JaLo, wish you have comfort and peace during this challenging time. allow yourself to grieve, it is healthy. am sad with you for the physical loss of your husband, but please know he is always with you in your heart, just as our oldest child is with us in our hearts. and I can reassure you this, there is an after life. what it feels like is full peace and love. I had a near death experience due to a physical emergency. I seldom talk of it, but you needed to hear it. if you need to talk pelase private message me. my tyipng is rough, but am extending a hand in friendship - you need it right now.
Believe me, you are not alone in your stuggle! I would think that most of us have other complicated issues along with our fibromyalgia. Although, different conditions, similar & maybe even the same as you in some cases. Myself, I suffer with degenerative disc disease in my lower back & neck. Degenerative arthritis all through my back, carpal tunnel, arthritis just about everywhere, tendonitis, chronic migraines (they started before the fibro) & PMDD. What we all go through, regardless of what it is, is bad enough. Add in the fibro & it’s no wonder many of us have to change our whole lives & deal with depression & anxiety. It hasn’t been easy for me, I’m sure that same statement applies to us all. I just seek out the positive in every day, even if it’s something like getting a shower for the day or making the bed. Celebrate every victory! I’ve learned that focusing on how miserable you are only compounds pain & makes you unhappy with life. I’m not saying you specifically are unhappy with life, but I think you understand what I mean. This group is so wonderful for support. I’ve just loved being a part of this community from day 1! Take good care of yourself & don’t be afraid to lean on those around you. I genuinely hope you have a good support system, so many people don’t. My husband is wonderful & thankfully my 7 month old doesn’t give me much trouble…yet…I know it’s coming! Haha Remember to pamper yourself & try to think of yourself first. We’re here when you need us! Gentle hugs, I hope today is a great day for you!
I was diagnosed with fibro back in 1991. That was followed by a diagnosis of Rheumatoid Arthritis in 2000. 2002 brought Chronic fatigue syndrome. In 2007, I was diagnosed with spinal and foraminal stenosis. This was the first diagnosis in some time that was fixable via operation. Unfortunately, the surgery did not work but a follow up surgery eight months later revealed that a twenty-year old spinal fusion was the cause as I had twenty year old scar tissue compressing nerves.
Since acquiring fibro, my immune system started kicking my ass. Since 1991, I've had pneumonia ten times. Yes, you heard me, ten times. Worse than that, I've had bronchitis sixteen times. I've also had surgeries for carpal tunnel syndrome as well as a compressed tendon surgery.
In March 2012, I woke up unable to stand or walk. My spine is degenerating and I have facet arthritis. I must now use a scooter. Even a cane is not working these days.
I long for the days when all I had was fibro. To quote Archie and Edith, "Those were the days."
The list is big from fm unfortunately.
Tachycardia (heart palpitations) had four surgeries to get it somewhat better, Congestive Heart Failure brought on with delivery of my child 4 years ago. Skin is discoloured and I’m red , I am always HOT and sweat poors from face.
Narcotic Bowel from the FM meds. I BS syndrome, bowel problems surgeon planned to remove it and give me a bag, I didn’t return! , Carpo tunnel, acid stomach problems again med damage,9 knee operations including patella amputation, hormone level basically nonexistent,
Osteoarthritis, chronic pain, depression ,anxiety attacks. Chronic fatigue, joints hurt, back, tailbone, back neck everywhere hurts all the time. If I vacuum or sweep I end up crying and beside myself from the pain, walking up the stairs awful, muscle spasms, very little movement in neck, when it flares up I become nauseous,dizzy, migraines stabbing pain in legs,ache. I don’t heal or recover well, if I get sick it takes longer for me to get over it, always tired.
I also got from FM and dealing with insurance company to get on permanent disability a frustrated husband who ended up my ex. He was tired of a sick wife and no money… Fm is awful had it since I was 18 years old and it has
Made many aspects of life difficult. I have found the older I get my FM gets worse and new things start.
I think I maybe able to deal with some of the pain better if I could get the depression under control and start living life. Very lonely but also prefer to avoid people because they don’t understand my health and that I don’t plan ahead . I go day to day. I’m sure I missed health problems caused by FM since my memory and organization has also been affected by FM
Angela, I so understand your story, thanks for sharing so honestly. I have had so many serious drug reactions, a dealt with that black hole called depression myself.
You are not alone. I have run into many people who don't do well with anything but natural treatments. My best results are clean water , clean diet, minimize exposure to toxins on every front, rest as able, and strive to maintain a healthy balance between my body, mind and spirit. I often fall short, but pick up where I left off. I use a private journal to blow off steam, since strenuous exercise isn't an option. I pray and meditate. stretch. am trying to attempt to learn Qi Gong to keep me moving - can do slower things, but body won't move fast!
I did find counseling for help with depression and anxiety usefull, and learned a lot.
There are many things we can do for ourselves. Being informed, listening to our own bodies, and being our own best advocates are so important. Agree if your doctor isn't a good fit, find a healer that is. For me this means functional medicine or holistic. No one doing it here, so hoping it will change.
You are a brave and caring person. I'm glad you posted andshared.
Alison, depression and pain run in a nasty cycle - one increase the other. Some depression is due to brain chemistry, some is situational. Vitamin D levels are usually low with either going on.
It does feel like as the years pass more and more gets piled onto our health situations. learning to live in the moment, with mindfulness, has helped me. Breathing exercises help with anxiety, and visualizations and meditation are calming and relieve a lot of stress. learning to be as kind to ourselves as we are to others can be hard, but we deserve it.
I know where you are coming from. I use to live a very active life, going shopping, yard sales, spur of the moment trips with my best friend, hiking. I use to be very active in church and now I rarely go because it is so hard to sit in the pews for however long, get hugged a thousand times and plaster a smile on my face so no one knows how I really feel. I have to plan everything around how I am feeling and I no longer go on shopping trips, when I go shopping it is on a must need basis and if I do decide to look around I have to go to a store that has the electric wheelchairs. I do go to yard sales, however, I usually survey the contents from the car or have whomever I am with go check it out and then if she thinks there is something I am interested in I go look at it. I have to plan my trips now, and it is on holding pattern to see how I feel the day of the trip. I will sometimes just take my meds, lay the seat back and say wake me when we get there and then I miss the whole scenic part. I use to love to go to all the parks and go hiking and see the natural formations of rocks and bridges and now I can't do that. People think because they can't see what is wrong with you and there is nothing to "look" at that you are putting on or you just think you feel that way and no one could feel that bad all the time. I tell them to walk a couple of feet in my shoes and they would be giving them back really soon. It messes with your mental state, because of the pain and the inability to do the things you use to do, you fall into a depression hole that you can't seem to get out of. No matter what you try to do nothing helps. It makes you feel hopeless and despondent and no one understands. They try, but unless they been where I am they can't possibly understand how bad fibromyalgia is. It doesn't just affect your physical being, but your mental, emotional, and your spiritual well being as well.
I didn't mean to ramble, I guess this is the first time I have voiced my thoughts and felt like I was talking to people who understood what I am going through. Thanks for letting me vent.
This is a great idea, and I certainly can relate and add to the post. But first I must say, hats off to all of you wonderful, supportive people. I love being here, and glad I am back. Now as far as the diagnoses goes, I have been labeled with many, including asthma, bursitis, carpal tunnel, tremors, anxiety, panic attacks, short term memory loss, confusion, balance issues, and vertigo, IBS, gastritis, hiatal hernia, psoriatic arthritis, depression, a severely injured upper and lower back with severe arthritis, and of course fibromyalgia.
If I thought about it any longer, I probably could come up with more diagnoses, but that is just to depressing. Anyway, my latest trip to the dr was today and I was told to go on a dairy and egg free diet. So now add, multiple allergies to the list of other allergies I already have and that is my latest diagnoses. This should be fun. Anyway, the list keeps right on growing. That's the part I do not like. Hopefully one day I can say, I have more control on all of these conditions. Thanks again. :(
Mary - you know, someday, someone will put the puzzle pieces together and discover those of us with a long list of challenges all have something unknown before in common. Maybe we are short on an important nutrient or brain chemical they don't have a name for yet, who knows?
I have realized this. people who seem to be in our situation are usually very caring, loving, and giving, so much so that they don't give themselves as much love and care as they do everyone else. I feel like stress, over doing, and not relaxing and replenishing take their toll long term. We also tend to internalize a lot, rather than lash out or act out. I hope that makes sense. Just an observation, my own opinion.
wishing you best possible wellness, peace, and joy!
Remember to pamper yourself & try to think of yourself first. We’re here when you need us! Gentle hugs, I hope today is a great day for you!