Pain 24-7 please help me
SleeplessNJ - Jul 5th, 2009 3:31 PM
[ Original Post ]

I'm a new person on this forum. I've been reading through the posts and it's bittersweet for sure. I'm 28 years old and for as long as I can remember, I've had pain in my legs. My mother always blamed it on growing pains, but I had my doubts. A few months ago when I had some stressful situations arise, the pain got to be unbearable, so I went in to the doctor for some blood work. Immediately after leaving the doctor, I got rashes on each of my arms on the inside of my elbows, my thighs and legs felt like they were on fire (kind of like an intense rugburn) each of my eyes developed raised cyst like bump in the corneas. I constantly have eye problems such as blurred vision and severe sensitivity to light. My blood work came back showing positive for Lyme's disease and after seeing a rhumetologist, I was diagnosed with Fibromyalgia. She basically told me I was in for a life time of pain and there was not a dang thing she would or could do about it. Since this, my husband and I have been under severe stress with him losing his job and some other problems as well, but the pain has been completely unbearable. Even typing this letter is painful for me. I can't leave the house anymore, my libido is completely non-existant, my arms, legs, hands, back and basically e-v-e-r-y-w-h-e-r-e is in such pain. Often it hurts just to touch me in places. I ask my husband to rub my legs each night and while it helps while he is rubbing, after the pain is back and I am up the entire night tossing and turning. We purchased a brand new bed thinking it would help..wrong! I am still up at night, pillows between my legs, tossing turning, keeping my husband up at night, sometimes waking up crying in pain. What do I do? This is ruining my life and my marriage. How will I ever be able to cope with this? I try to be a go-getter type of personality, remaining positive, but this disease is making me think dark, unhealthy thoughts. I can't live with this forever. I have tears in my eyes just typing this. I can't work, but need the money. If I do laundry one day, I'm completely shot for days after. Everyone looks at me as if I'm lazy or making this pain up. My husband doesn't seem to get how much pain I am in. Sometimes I think everyone around me thinks this is a made up condition. I live in NJ and would be very interested in possibly forming a support group. Another road block is, the doctor's who do specialize in this, don't accept my insurance. The ones who do, either do not know anything about Fibro or say they don't want patients who have it. Almost like they think it's a waste of their time.

Please help. I'm desperate. I can't live like this anymore.

Andrea

Comment


 

michelle J - Jul 5th, 2009 7:30 PM

I was at the hairdressers the other day she showed me a big write up on Lyme disease they say too many people dont get the write care .I would seek another doctor go on line and Im sure there site will help you out .I would also get a copy of those blood test to have for your records.If you do have Lyme disease you need alot of antibiodics.


solanadelfina - Jul 5th, 2009 10:40 PM

Welcome, Andrea.

That rheumy who told you that nothing could be done should be shot. It's true that there's no cure yet, but there are meds and different treatments to make our lives easier. If it's possible, I'd try to go see someone else so that you can get started on meds to be making you feel better. The Lyme can be taken care of.

See if your husband would be willing to go along to the doctor with you and read the posts on this site to understand what it's like. On the support group, there's a wonderful letter to the normals which explains what fibro is and how it's changed our lives. Most importantly, it reminds everyone that we still are who we are, just with something extra going on.

Massage is a great start. There are some wonderful little rubber-tipped massagers that come in bath sets, which are easier for a person to use (longer massages ;) ) and get more pressure. I also swear by hot baths, especially with yummy salts like lavender. Heating pads and heated mattress pads are also a blessing, and even warm cups of tea.

There are many meds that we use, from Lyrica to Cymbalta to tramadol. Many of us also take things to help get a good night's sleep, which is vital for us. A good multivitamin is also important, and many of us are short on magnesium. I take a supplement and eat almonds every day.

Fibro is unpredictable, but getting started on a treatment plan will help. Humor and doing little things to make yourself smile are also very important. We're here for any questions you may have, or a good rant. Take care and keep us posted. :)




solanadelfina - Jul 5th, 2009 10:42 PM

Actually, the letter is under Support- family members, under 'please read it may help all those who don't understand'.


FibroGal - Jul 6th, 2009 12:42 AM

Andrea, you mustn't give up. I agree with the previous poster that there are ways to help get some relief. I can relate to the laundry thing. Day or two after laundry is shot. I'm exhausted. You're not alone. Your doctor was wrong. There is hope of feeling better, you just have to find what works for you. I understand about family not understanding. Many women are expected to have a job as well as keep house, do the chores, take care of the kids, have a hearty hot meal waiting for their husbands after work every day, do the cleanup and manage the family social calendar. It's just too much. You must show your husband some info on fibro. And ask for help. Do you have any support from other family or friends? Keep looking for a doctor who understands your condition. I recommend a book by Devin Starlanyl called The Fibromyalgia Handbook. It is a comprehensive source for understanding the condition and she is so knowledgable on the subject. It was written back in the 90s but I think it is still unsurpassed in it's thorough coverage of what fibro is and how to treat it. Remember, don't give up. Post here ad often as you like--especially when you feel like giving up. Your doctor was wrong. There is hope for relief and even though you feel defeated, it's evident in your post that you believe there is as well. Stay with that and let it motivate you to find the right doctor and the support and resources you need.


FibroGal - Jul 6th, 2009 12:49 AM

Actually, the book I meant to reference is Fibromyalgia and Chronic Myofascial Pain: A Survival Manual, 2nd edition, by Devin Starlanyl. Fibromyalgia and CMP often go together.


FibroGal - Jul 6th, 2009 1:02 AM

There's an interesting website. Co-cure.org/Good-Doc.htm. It has a list of good doctors recommended by FM patients. The list is broken down by state. Looks like several in New Jersey. Also, maybe the National Fibromyalgia Association could help. Check their website as well.


Pattiann - Jul 12th, 2009 6:42 PM

Andrea,

I too live in NJ and would love to assist in support group if you would like. I am old enough to be your mother, but fibro does not really know an age. Though there is a "panel" of who and when it strikes, it can strike anyone at anytime in their life. I have been living with this for 10 years but diagosed 3 years ago. I just get up each morning and decide how to work and live with the days symptoms. It is pretty much the way to go with this. When I have blurry vision, my computer screen is real close. When I have unbearable pain throughout my body, I rest and take tylenol as much as I can. Having a supportive family is a huge part in this. If you are a spiritual individual, there are a couple of really good books to help you in the state of mind fibro can put you in. Please let me know if I can be of any help. It is a menacing and life changing disorder, no doubt about it, and it makes you act and sometimes feel so much older than you really are, not permitting you do participate in activities you normally would, but it is NOT the end of the world, and so many others have worse afflictions.

Patti


kellywelly - Jul 14th, 2009 2:01 PM

Good evening to anyone who may look at this tonight. I am almost 40 now, and have had many different conditions over the past 10 years, ranging from Symphosis pubis dysfunction,tennis elbow,osteoarthritis,de quervains syndrome and most recently costochondritis, and having read a little of the info and comments on this and other web sites, I am starting to think there could be a link.I live in England, and do work at the moment, but am considering reducing my hours,as life is awful. I have left work early twice in a week, and the rest of the time at home has been spent in bed.
Is there anyone who may be able to help or advise me please.... I would be soooo grateful.
PS
I am terribly tearful at the moment and I cannot even blame it on PMT or anything else I can think of really.
Thank you very much.