I've been on Calcium with vitamin D for years because my doctor caught osteoporosis very early & get my vitamin D checked yearly to check for problems with my thyroid or an autoimmune disease, but the tests are always normal. I also get monthly shots of vitamin B-12. Rarely my nails will flake off in layers & I have to file them down thin to get past the layers.
So, I appreciate that suggestion, but it doesn't seem to fit. My last vitamin D test was in July - normal.
I've known for 20 years since I was diagnosed with FM, that it affects the fingernails with "beaking", where the nails curve down instead of straight out & the vertical lines. Well, I've had a new thing happen with my fingernails & wonder if it is related to FM or not. I keep my nails cut short because if they get 1/2 inch past the tip of my finger, they start to "beak" & if I let them go longer, they break off, so I just keep them cut. Well, this past month, my fingernail tips have become thin & very sharp. I file them flat, but they still seem thin & sharp. So sharp (and this is very embarrassing) that after I went to the bathroom & wiped myself, my fingernail cut thru the TP & sliced my delicate area, causing me to bleed for several minutes.
I know the change in my nails is not due to a change in diet. I'm diabetic & have been eating the same foods I've been eating for the last year when I was diagnosed with diabetes. I also know that it takes a few months for the nail that is at the tip to have reached that point from the base of the fingernail.
I have so many health issues & I'm in constant pain. I have spells where my skin burns if anyone or anything touches it. I was that way a couple of months ago & it lasted for a month. I don't know if that is FM or CMP or something else, but maybe it is connected with my fingernails.
I just wonder if anyone else has had similar fingernail problems - being thin & sharp.
I had never read anything before about FM causing noise sensitivity. I'm like MaryinMt - my husband is from a family of 7 children & when the entire family gets together, there are over 30 people in the house. The noise is overwhelming & I try to find the quietest group to sit with or just go sit in a bedroom with the door closed.
And like angelswife - the loud TV! I can't stand to be in the same room. My husband has it on & I can be at the other end of the house with the door closed & still hear it! He wants me to watch TV with him but I can't handle it. Part of him having it so loud sometimes is that he has a problem with ear wax building up & has to clean it out. When he does, the volume goes down for about a week or two.
I do have one advantage, if you can call it that - I'm mostly deaf in one ear & have a slight hearing loss in the other. Even so, things are often too loud. When his alarm goes off in the morning, I don't hear it because my hearing ear is on my pillow.
But I have a double whammy with noise sensitivity - I also have Bipolar disorder & that causes me to be extremely noise sensitive.
Thanks for posting that info. We learn something new every day, don't we?
Thanks. I hope this helps others as well. It just makes so much sense to treat the myofascial points first, slowly, before working on the FM points. Because that wasn't done on I & my can run my arms in certain places & it's like rubbing over a washboard. Do you have 'beaking', downward curving with your fingernails? A lot of people with FM have 'beaking' but don't know what it is. It was one symptom that lead to a diagnosis on me.
How long have you had FMS & CMP? And did you go thru years of improper treatment before receiving proper treatment?
I have the FMS, CMP, CFIDS, and I have a serious back injury. There have been a number of times when I have thrown up, not just from PT, but even from going to Walmart for groceries. It's all mixed in together. I don't know where one pain ends and another begins. The trampoline sounds fun, but not with my back.
I left a message on the resources & want to tell what is making me leave such a warning. I was diagnosed with FMS 20 yrs ago & in the next 5 yrs the additional diagnoses of CMP & CFS (CFIDS). My doctor at that time was very eager to learn anything he could about these diseases, but he was also very cautious about "exercising" the muscles. Sadly, he moved & I've been with a different doctor for the last 14 years. I like her a lot. She puts herself on the patients level & is willing to admit when she doesn't know something - most of the time.
However, she is one who puts all 3 diseases into one pot and calls them fibro. If I go in, "Oh, it's the fibro." For almost 15 years I have gone thru PT & pain clinics & steroid tablets & shots. Everything was always focused on the FMS. I'd start out okay the first week & get worse every day until I had to quit. After a month or so, we would try it again. One time we did it in conjunction with steroid shots at a pain clinic & I ended up so sick I couldn't get off the bed. In Dec., we tried water therapy & I almost threw up the first session & was mush worse after 4 weeks even though the therapist had toned down the therapy considerably. In Jan., it was epidurals. Everything focused on the FMS. Finally, in March, she said no more treatments at all, it simply wasn't worth making me worse.
Well, in all this time, I've been getting worse. Of course I'm in a lot of pain in my muscles & I have a lot of pain in my back from a fall 25 years ago & I thought my back was getting worse. I'm reached the point of not being able to walk alone several months ago. I'm very wobbly & start to fall when I try to stand still. I have to have one person to support me on my good days, 2 on my bad days. I go to Walmart in the door near the pharmacy, get my meds & get back to the registers, then I have to sit on a bench while my husband does the rest of the shopping. I've tried those electric carts - they kill my arms.
Anyway, I went to see a rheumatologist in July & I told him my history of all the PT, shots, meds, etc. I wanted to know what exercises I could do that wouldn't make the FMS & CMP fight against each other. He looked at me for a minute, shook his head, then said "I'm sorry. You're going to be in a wheelchair in the near future." I thought he was referring to my back injury. Now I know he wasn't.
I don't have a copy of any of Devin Starlanyl's books on FMS & CMP, so I love being able to find excerpts of it online. I was shocked when I read the information that I posted in the resources. This particular book was written to those in the medical profession, but even those of not in the medical field can benefit from it.
It ended with the statement "It is not that unusual to have one of these undiagnosed or misdiagnosed patients come bed-bound or in a wheelchair, and it is in your power to get that patient functioning, managing his or her own medical care, and enjoying life once again."
In addition to talking about undiagnosed or misdiagnosed patients, it talked in length about improper treatment & how it leads to causing one to be totally disabled.
I believe that the combination of 14 years of intense PT, steroid shots & pills, and my back injury getting worse is what lead the rheumatologist to say that I will be in a wheelchair in the near future. I've had the wrong treatment for too long. And my lower spine is completely smashed together. When they tried to get an x-ray of it, they couldn't distinguish any of the bones.
Anyway, just a word of advice for those with FMS & CMP - if your doc & PT are treating your FMS first, don't let them. The CMP needs treated first. This is 15 years experience speaking. Make them do it right, please. It takes more time, but it will be worth it.
You can see how my mind is. I must have taken me an hour to write what I wrote & still some typo's got thru. I wrote, "FMS does make us tired, fatigued, all the time. I posted earlier about sleeping up to 12 hours at night - it's more like spending 12 hours in bed because it is really good sleep - yet getting up & still not having any energy." I meant to say it isn't a really good sleep. I wish it was. Wouldn't we all love to have 12 hours of really, deep restoring sleep?
FMS does make us tired, fatigued, all the time. I posted earlier about sleeping up to 12 hours at night - it's more like spending 12 hours in bed because it is really good sleep - yet getting up & still not having any energy. I have had times when I've gotten out of bed, got in the shower & couldn't get out. I was so exhausted that I just couldn't step over the side of the tub & my husband had to get me out. He always says showers feels so wonderful, so refreshing. To me they are exhausting.
Other's comments are mirrors of my own life as well. I used to be the "perfect" housekeeper, yet now it can be a week or more before I sweep the floor. (Thankfully my husband vacuums) I'll wash the laundry, but they can sit a week before getting folded, which by that time they need done again. I used to be a bookkeeper. Now I screw up our checkbook every time I use it, with double entries or missed payments. I can't remember anything at all. I write things down on sticky notes, but if I don't write details, I have no idea what it is about. Yeah, I was that "get it done" type of person, a real perfectionist. I'm 47 now & started showing symptoms of FMS in my teens & they became full-blown by age 25. I pushed thru it for as long as I could, but by age 30, I also had additional diagnoses of CFIDS (formally known as CFS), CMP & arthritis. I also had a major back injury when I was 22 and I have had epilepsy all my life.
Some have talked about medications that have helped, some about not being able to take medications. I fall into the latter category thanks to the CFIDS. There are also precautions that have to be taken with some meds & some of my health conditions.
I've described fatigue a couple of times here - beyond tired, feeling like weights are tied on me, etc. Sometimes I don't think there is any way to fully describe the extent, the severity of what FMS fatigue is & how it affects us. How do you explain to others that are not in your situation that simply walking in the grocery store for a few minutes exhausts you? Or that you can be with friends and even though you are sitting most of the time, you still become exhausted in a very short time. My sister & nieces love to take me to thrift stores, but standing & pushing thru those racks of clothes & exhausting, so I haven't done it in some time. I hate not being able to do what others do. Others take their agility, their strength so much for granted. I guess we all did until this monster hit us leaving us to fight the fatigue every day. Now that we have it, all we can do is our best. Let's just do our best and don't beat ourselves up for what we aren't able to do. Best wishes to all my fellow endurers. SheliaView Thread
Thanks Joan. It is really difficult for some people to realize that a shower can take every ounce of energy out of you. Once in a while I have to just lay on the bed after taking a shower, too exhausted to even get dressed. We want to take the tub out & have a shower with a bench for me to sit on, but everyone tells us that we shouldn't because it is the only bath & if we ever sell, people want a tub. So I endure based on what other people say. It's terrible to say, but isn't nice to know that others know how we feel. I wouldn't wish this stuff on anybody. But I'm glad to receive & give encouragement.
You take care, too, Joan. We walk in each other's shoes.
Amen Maggie, Amen! I'm not allowed baths with my epilepsy, but most of the time I'm simply so exhausted standing in the shower. People say "Oh, how refreshing that shower was!" & I'm leaning against the wall getting more tired by the minute. I've actually had to call my husband to get me out of the tub/shower a few times because I couldn't stand any longer - that's fatigue! I detest it!
And so true, too, about not checking in every day. Just so tired I don't care about anything. And so tired that my mind can't function to get the right keys on the keyboard - I want to capitalize, so I enter, and vice versa, and pushing wrong letters.