New here (and relatively new to chronic pain so would appreciate any advice).

Clair - posted on 09/01/2009 ( 6 moms have responded )

4

12

0

Hi all, my name is Clair and I am 26, have a Daughter Isabella who is 2 in October and have been suffering with chronic pain for almost 2 years! I was pointed to circle of moms by my Sister as I have been getting quite down (as im sure most of you may have) and she said it may help to talk to others in my situation as I have no one that really appears to understand how frustrating things can get!



I had Isabella in October 2007, she was planned and although people say that there is never a right time for children, for us it really was the most perfect time. My Husband had just got a new much better paid job with much better prospects, we had been feeling financially stable for a while, were at the happiest we had ever been in our relationship and I could work part time or even stay home so could do what we chose rather than what had to be done. Things could not have been more perfect but 6 weeks after my emergency c-section I was still getting quite bad pains which I was concerned about. Things started routinely, treating me for possible infections even though everything seemed to have healed amazingly then looking for possible issues with gynaecology appointments as it started in my abdomen, near my c-section scar. After about 4 months things got worse and the pain was spreading to my back and by a month later I was in pain all over my body, felt weak, had muscle spasms, at points stopped being able to feel my legs and suffered with severe fatigue unlike anything I had ever flet before.



In May 2008 after my Husband kept having time off to help with Izzy and to help me, we exhausted all other options (no childcare in our area had spaces as we live in the middle of nowhere!) and my Hubby had to give up work. Since then my pain appears to have got worse and worse and never seems to have shown signs of improving, only appearing to be helped with pain killers and other meds but things still are getting worse with other symptoms showing every now and again.



Around 2 months ago I got the diagnosis of Fibromyalgia although im still a little sceptical about this. I have an extremely understanding Doctor who listens to me and trusts my opinions too and he has been amazing. My Husband has been a lifesaver and I dont know what I would do without him but after almsot 2 years, even with all the medication I take and the Doctors I have spoke to and the diagnosis, I still for some reason feel completely lost and feel like I havent been given a diagnosis as I still dont feel any better off. I have been on anti depressants for over a year but recently, dispite everything except my health going well i still keep feeling very down, sometimes it just comes out of nowhere and feels like I have no reason to feel down.



I have to use a wheelchair as I cannot stand or walk for longer than a couple of minutes without causing myself pain which will keep me bedbound for days, when I do walk I usually use a stick. I still try and do as much as I can because I feel as though people say (in not so many words) that I have caused it by not pushing myself to do more and that my pain is caused by me not doing as much - what they dont see is the days where I push and push and push myself because people have made me feel like I have caused it and then cannot move for days.



As you can see I have had a very up and down two years which also happen to have been my first two years of being a parent!!! That in itself has bought on feelings of guilt and uselessness and at times I question myself wondering if I am causing these problems. I have tried so many things to help and have not found anything yet!



I am experiencing new symptoms that I have yet to talk with my Doctor about but am suffering numbness in my mouth, my tounge and face and for about the last year have suffered slight loss of feeling all down one side of my body (which no one seems to have been bothered about so dont know whether to worry or not??!!!).



I would like to say well done if you got through that story and a half!!! I have a tendancy to write way too much as once I start, I feel there is so much to write about!! I would love to hear of other peoples experiences and advice if you have any, because compared to some people, I know I have not had this for long at all. I think it is just nice to know I am not the only person feeling like this, not the only person that feels like others dont understand, not the only person that feels they are constantly having to explain why they 'dont look ill' and to have other people to talk to about all these things that I feel like other people wouldnt quite understand.



Thank you for reading this and thank you to anyone that takes the time to reply, I really do appreciate hearing from other people that are going through or have been through this.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

6 Comments

View replies by

Margaret - posted on 09/06/2009

301

37

36

with the new symptoms consider the possibility that they may be a side effect of the drug or a complication of your condition and definitely bring them up with your doctor particularly if they are not consistent with a Fibromyalgia diagnosis.

it never hurts to get a second opinion if you feel your GP may have been off base and it definately doesnt hurt to seek out a specialist opinion either. iv seen far to many doctors get it dangerously wrong to take even a trusted diagnosis as gospel because even they may change their opinion when reconsidering when there isnt improvement at all.

keep in there and try to take care of yourself that really is all you can do

Susan - posted on 09/06/2009

111

48

16

Hi Clair, Wow, I have started reading all the different replies. I feel for all of you. I agree with the nurse who responded to you. I have a couple of people taking nutritional supplements that have fibromyalgia and your symptoms sound much different. It almost sounds like something to do with a pinched nerve or something of that nature...I would definitely go for another opinion.
If it is fibromyalgia the one thing I have learned is you want to work on your immune system. Add optiflora (which is 80% of your immune system) to your diet.
Check out the book, Prescription for nutritional healing. It can be found at most bookstores. The book works to solve health issues thru diet, herbs, and vitamin supplements.

Shaklee has the best nutritional supplements, They are 100% pure and Shaklee 100% guarantees them...so you can use them all and if you don't feel a difference you can get your money back, no questions asked.

If you want more information, just message me back.

Susan

Heather - posted on 09/06/2009

1

12

0

Hi Clair, I started with a crazy symptoms when I was pregnant with my last child now 9 years old...I started with Crohn's, depression and over the years the pain got worse and worse I was unable to walk or lift things even a gallon of milk was too much. 2 years ago I was diagnosed with Fibromyalgia and Lupus. My Lupus has not made it to any organs yet but it is in my joints,and soft tissue so it is called " Mixed Connective Tissue Disease" Auto Immune diseases attack the body in different ways. You might notice how you feel like "dieing most days" then it may gradually relieve for a bit and just as you think Oh I must be feeling better Bahm a FLARE pops up and it starts all over again because of stress or over activity or lack of sleep. Go to websites listing Auto immune Diseases like MS. Lupus, Fibromyalgia etc. Get information write down ALL your symptoms even the ones that you think aren't so bad all the time. Your doctor need the full picture of your daily life. Request blood work like ANA, Thyroid, etc, tis is real not in your head. Good luck! I hope you get answers soon. It may not be what you want to hear but at least then you can get some sort of help.

All My Best,

Heather

Fern - posted on 09/05/2009

111

10

9

Have you been tested to rule out all the other things this could be like lupus, MS, autoimmune problems, etc.? If not, you should have these tests. Its the only way to determine if you have fibro, that an a tender point test. It does sound like the trauma of the surgery and the birth of your daughter caused whatever illness this is to start up. It very well could be fibro, but it sure sounds like more than that by the way you describe it. I am a nurse and a chronic pain patient. I had a shoulder injury back in 1993 while lifting a patient at work that caused me to develop fibro and myofascial pain disorder.

I too know how hard it is when friends and family think you are being lazy or that you can push through the pain. This is not the kind of pain you get from doing too much exercise or doing too much that goes away easily. This is pain that is unrelenting and doesn't go away no matter what you do and if you push too hard it just gets so bad you cannot move. It sucks the life out of you at times and you just don't feel motivated to do anything.

The key is to get enough sleep and the right kind of sleep. Get a sleep mask and put a fan or other white noise instrument in your bedroom. Keep the room as dark as possible and try to get at least 8 hours every night. Pace yourself when you are up and doing something. Rest as often as you feel it is necessary. And don't beat yourself up for having pain or because you have limitations. Acceptance of your limitations is the first step to learning to cope with the pain. Talking to others who have pain also helps a lot.

Clair - posted on 09/02/2009

4

12

0

Hi Anne, thank you for taking the time to reply to my (very long) post.



My Husband has said to me a few times that he notices that I have bad days with my pain when I am either stressed or have not had much sleep, as my pain also effects my sleep.



I dont have a place of worship and feel a little unsure about my religious beliefs (as well as feeling unsure about everything in life at the moment). I did want to start going to Church when my Daughter was born as I think that religion can be good and it would allow my Daughter to make her own mind up about her beliefs when she is older but could make that decision with some knowledge of Christianity. I feel that since I have become ill, I would feel little bad going to Church now as I dont want to be one of those people that only prays when they want something or feel the need for help.



I have said a few times that I wish I could give others my pain, just for a day or even a couple hours just so that they can appreciate the pain I feel constantly. It isnt just the physical pain either, it is also the way it effects you emotionally and psychologically! It makes me feel useless at times and I kick myself if I have a bad day, feeling like I am wasting my life not being able to do anything. I also feel like others think I am lazy as I have had a few people say "try getting some exercise each day and I know you will start to feel better"!!! That just feels so patronizing as I HAVE tried exercising and it causes the pain to become so bad that I am unable to even sit up for days! Everyone seems to have all the answers and acts like they think I wouldnt try anything and everything to get better! It does make me want to scream but I usually just smile politely!!!



I know you are right, unless there is something that people can see which 'proves' you are ill, people think you are fine and can simply take some paracetamol and be fine! I dont think this will ever change so I think I am going to have to learn to accept that people dont understand but how could they unless they had been in the same situation......I would have thought very differently had someone told me they had this, had I not got this myself. I think I have learned never to assume you know what is going on with someone just by looking at them.

Anne - posted on 09/01/2009

2,755

82

625

Hi Clair, First of all do not beat your self up for what you can not do. Although I would NEVER tell any one in Chronic Pain that they caused their pain, I know with me when I am stressed my pain is worse. If I let myself I could stress myself into days of awful pain. The biggest problem with pain is that unless you have a cast or some other noticeable problem no one knows how bad the pain really gets.

I just charring at the over the counter adds that have a person saying that this over the counter or that otc pain killer works on their pain, I can not help but think that they must not really know what real pain is. It is mean of me to think this I know.



Do you have a place of worship? I know for me the caring and Prayers of the people in my Church have really helped,not only me but my family to cope with the problems that pain really does cause.



I hope maybe even one thing i said helped you.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms