I just don''t feel well anymore...

[AmberGretchen]

I am so glad that you felt you could unburden yourself here and hope that sharing your problems will lighten your load even a little bit. We all are here to support you in this ordeal, and will be sending good thoughts and prayers for your improved health.

I can only imagine how difficult it must be for you to deal with all of this pain, and then the chronic stress and fatigue that creates. Huge hugs and healing thoughts headed your way - I really hope that things take a turn back towards the positive for you soon, and I applaud your courage and willingness to trust the community here to help support you.

 

[risingsun]

I am so appreciative of all the new responses. It truly makes a difference to know that you all are thinking of me and sending good wishes. I''ve just had another spasm and I''m exhausted

I''m going to look at some bling.

 

[Novel]

Thank you so much for sharing. As a fellow chronic pain patient and mystery diagnosis, I have so much sympathy for you, but am also so impressed by your willingness to share and be open. It takes strength, not to get through it, but to maintain your personality and your humanity through it. Thank you for sharing...

 

[gardengloves]

Date: 2/3/2010 11:46:29 AM
Author: risingsun

Date: 2/2/2010 11:42:05 PM

Author: gardengloves

Hi Rising Sun,


I'm a newcomer to PS, but think you've taken a great first step towards healing and wellness but eliminating the stress of going back to work, and taking the time to focus on healing. A very courageous step. You need the time to tend to your health in a stress free environment free of deadlines looming, and I congratulate you on taking this important step. I hope you mend and heal and reknit your body in this golden time just for you.


As a chronic sufferer of MS I wish you well on your voyage to wellness. Miracles do happen. Thanks for reaching out and allowing us to help and share. Don't trouble responding, you need complete freedom, social commitments and polite interactions are also a form of stress... you need a time to focus on your wellness. Be well.

I am so sorry that you are suffering with MS. Do you have your pain under control? I will have you in my thoughts and prayers, gardengloves. Thank you for your kind words to me.

Thank you so much Rising Sun. MS is very strange and weird,not necessarily about pain- in my case -more loss of coordination,vision problems, loss of balance, but I am well, working, active and episode free for ten years after last attack. A stress free environment is essential for healing. I wish you well and again applaud your dropping all stress inducing shackles to concentrate on complete healing. That takes the courage of a warrior, you can do it, be well. I have great faith in our abilities to heal. Take care.

 

[Squirrly]

thoughts and prayers to you RS, and all those who are suffereing/know someone who is suffereing with chronic pain. i hope you all can be painfree again someday!

 

[Should Be Studying]

I am a longtime lurker who doesn''t post much, but I have seen so many of your posts. At first it was your gorgeous halo that caught my attention, but I can tell from seeing your posts what a sweet person you are. I am sorry that you are going through all of this, and I hope your pain can be alleviated in some way. My thoughts are with you, and I hope things get easier soon.

 

[risingsun]

My PS friends have lifted my spirts with their generous outpouring of support and good wishes. I continue to take it a day at a time. I do have days when the pain and discomfort are less than on other days. I am saving this thread to reread when I am feeling down. It really helps me

 

[gemgirl]

Marian, I just went back to your first post to see if I can offer any help and I realized that I have everything you have with the exception of the possible blood disorder. I have a severe case of Fibromyalgia that affects me internally as well as externally which my Rheumatologist says is rare; Costochondritis, Osteo- arthritis, Osteoporosis, seven degenerated discs, torn right rotator cuff, full left sided neuropathies (from a horse back riding accident that almost killed me), migraines, TMJ, IBS with complications (don''t ask), four other digestive problems, and CFIDS. Then there''s all my heart problems, endocrine and GYN problems..... All of this was not to hijack your thread but to say that a lot of this, your state of mind and the management of your pain is up to you. I have six doctors that I see every three to four months that I believe are the finest where I live, but they are limited. They can only do so much to help. Traditional medicine is limited. You have to research as much as you can, search out and ask questions of anyone that has similar ailments, join support groups just to be around other people with the same ailments and by trial and error, start trying to find things that might work for you. Before Christmas, because of a bout with bronchitis, I dislocated two ribs from coughing and sneezing. My ribs were reset five or six times before I started to feel a little relief from pain and when my chiropractor was somewhat disappointed with my pain level remaining high, he started me on twice weekly treatments of a combination of ultra-sound and TENs therapy. Not only does it really help with pain, but it helps the body to heal. I''ve made more progress with my pain in the last two weeks than I did in the whole month that came before. A combination of ultra-sound and TENs is something worth trying. He used on me when my rotator cuff flared up a few years ago and it helped enormously then also. I also always have a working TENs machine at home that I use with a few good moist heat packs. The best moist heat packs are made by a medical supply company called Duro-Med and they can be ordered on line through the Target website for the cheapest price.

I go through debilitating bouts of feeling sick, feverish and flu-y too to the point of not being able to stand from the pain and fatigue, especially in winter time. Have you ever seen an Infectious Disease specialist to check you for CFIDS? You may very well have that too, not that the regular AMA types can do much to help that either, but it would be an explanation for what you''re going through.

Please no one respond to my case, I''m just trying to help Marian. I''m not trying to thread-jack.

 

[MeowMeow]

I do not know you, but I am so sorry to hear that you are in so much pain. However I just wanted you to know that I am thinking of you and I will continue to keep you in my thoughts! I have migraines and problems with my jaws as well so I totally feel you on those. Please know that you have my support if you need anything!

for you!

 

[risingsun]

Date: 2/7/2010 2:12:47 PM
Author: gemgirl
Marian, I just went back to your first post to see if I can offer any help and I realized that I have everything you have with the exception of the possible blood disorder. I have a severe case of Fibromyalgia that affects me internally as well as externally which my Rheumatologist says is rare; Costochondritis, Osteo- arthritis, Osteoporosis, seven degenerated discs, torn right rotator cuff, full left sided neuropathies (from a horse back riding accident that almost killed me), migraines, TMJ, IBS with complications (don't ask), four other digestive problems, and CFIDS. Then there's all my heart problems, endocrine and GYN problems..... All of this was not to hijack your thread but to say that a lot of this, your state of mind and the management of your pain is up to you. I have six doctors that I see every three to four months that I believe are the finest where I live, but they are limited. They can only do so much to help. Traditional medicine is limited. You have to research as much as you can, search out and ask questions of anyone that has similar ailments, join support groups just to be around other people with the same ailments and by trial and error, start trying to find things that might work for you. Before Christmas, because of a bout with bronchitis, I dislocated two ribs from coughing and sneezing. My ribs were reset five or six times before I started to feel a little relief from pain and when my chiropractor was somewhat disappointed with my pain level remaining high, he started me on twice weekly treatments of a combination of ultra-sound and TENs therapy. Not only does it really help with pain, but it helps the body to heal. I've made more progress with my pain in the last two weeks than I did in the whole month that came before. A combination of ultra-sound and TENs is something worth trying. He used on me when my rotator cuff flared up a few years ago and it helped enormously then also. I also always have a working TENs machine at home that I use with a few good moist heat packs. The best moist heat packs are made by a medical supply company called Duro-Med and they can be ordered on line through the Target website for the cheapest price.

I go through debilitating bouts of feeling sick, feverish and flu-y too to the point of not being able to stand from the pain and fatigue, especially in winter time. Have you ever seen an Infectious Disease specialist to check you for CFIDS? You may very well have that too, not that the regular AMA types can do much to help that either, but it would be an explanation for what you're going through.

Please no one respond to my case, I'm just trying to help Marian. I'm not trying to thread-jack.

OMG, gemgirl, we sound like twins

I live in an area with limited resources, but I will check into your suggestions. I know that there is a TENS unit that can be implanted, but I don't know if I am a candidate for that. My TENS unit is from the dark ages, so I can inquire about a new one. I no longer trust my driving for longer distances and regular trips, on my own, to a larger medical center would be very difficult. Thank you such much for sharing your story and the remedies and resources, which have been helpful to you. I'm sitting here tonight feeling flu-y and in pain from my back, knees and elbows. A migraine is brewing. DH is away on a business trip and we're expecting more snow. It's just me, the dog and the cat! I'm very concerned, as is my gyn, that I cannot take the osteoporsis meds that she has prescribed. My dentist has advised against them due to my jaw problems. Oh happy day

ETA: I just looked up the sx for CFIDS. I could be the poster person for it

I will definitely speak with my MD about it at our next appt. I have no stamina and am chronically fatigued. I have most of the other sx, as well. Actually, I'm not surprised. Thank you for bringing this to my attention

 

[risingsun]

Date: 2/8/2010 11:04:28 PM
Author: MeowMeow
I do not know you, but I am so sorry to hear that you are in so much pain. However I just wanted you to know that I am thinking of you and I will continue to keep you in my thoughts! I have migraines and problems with my jaws as well so I totally feel you on those. Please know that you have my support if you need anything!

for you!

Thank you for your support. I''m sorry that you are also dealing with migraines and jaw problems. It''s so difficult

 

[MeowMeow]

It defenitely is hard, but at least I can take a few medications for mine and go to sleep. I wish you could too. It must be so difficult not being able to take anything for your pains

I am not sure if it would work for you since you have a hard time with pain meds but did they ever have you try fioricet for a last resort migraine medication? Thats what I always use when nothing else works.

I really hope you find some relief! In the meantime I''m always here if you need to vent

 

[Niamh]

Hi Risingsun,
I mostly lurk, but wanted to get on and tell you I am so sorry for all of the pain and frustration you are experiencing. I don''t want to thread jack but I have celiac and earlier this year while I was pregnant I got a strange mutated form of strep that attacked my ear and eye. Anyways, I don''t do well with pain medications and it took a lot of meds and very strong antibiotics to get the infection under control.I ended up in the hospital for a while, and was sent home with a pick line for iv antibiotics which I had to have 3-4 times a day. To top it off I was told I may lose my baby and that there would probably be many complications with her and she''d probably have to be in nicu for a while. Anyways, to make a long story short I found a doctor, Dr. Tennant, who does a lot with chronic health problems and pain. He was my miracle. I was completely deaf in one ear from the infection, and as far as I can tell all of my hearing has now been restored to it, I''m a musician so I am extremely sensitive to this. I still can''t see out of one of my eyes and my doctors still don''t know quite what its doing, it has improved and is taking a long time, but his methods and device the biomodulator has controlled my pain. He really helped me, if you are open to it you may want to consider looking him up on the web. He has been the only thing that has gotten me results. I have now been pain free for months, got off all of my meds much sooner than expected, and my baby ended up being fine. My mom has fibromyalgia and has had some good results with his device also. I am sorry you are suffering and hope you find your answer.

 

[diamondseeker2006]

Oh, Marian, I am just now seeing this! I am terribly sorry to hear how you are suffering. I recall so clearly how LostSapphire was in a similar situation, and I believe that the many prayers for her worked. So I will pray for you and I know many others will as well! {{{hugs}}}

 

[LostSapphire]

Wishing you a low pain day today, Marion.

soft hugs.

LS

 

[somethingshiny]

Hope today is a good day, risingsun!

I''m very astounded by the number of PSers who are suffering with chronic pain. I''d never have guessed that any of you had such difficulties. You''re all very strong women and I admire you.

 

[Judah Gutwein]

Marian,

Really very sorry to hear about your health issues.
Truly, the support you are getting here on PS from all of your friends, is inspiring to me - so I can only imagine that you are deriving much inspiration from it yourself.

Hang in there and take care of yourself.

Judah

 

[whitby_2773]

marian -

can you give me an update on how you are pls? i've been reading this thread daily and didn't like seeing you were having a flu-like bout 2 days ago and were home alone.

fill me in on how you're coping pls? is your husband home? do you have a support network where you are?

love to you,

 

[AGBF]

Date: 2/10/2010 11:04:04 AM
Author: whitby_2773

can you give me an update on how you are pls? i''ve been reading this thread daily and didn''t like seeing you were having a flu-like bout 2 days ago and were home alone.

I, also, would like to know how you are doing with your ''flu like symptoms, Marian. Did you figure out their origin? Have they resolved? Do you feel any better? I did notice that you posted in some other threads (losing yourself in bling as you promised), but I have been doing a lot of lurking. I just wanted to let you know I''m still here and that I care about how you are doing.

Hugs,
Deb/AGBF

 

[risingsun]

Date: 2/9/2010 12:49:21 AM
Author: MeowMeow
It defenitely is hard, but at least I can take a few medications for mine and go to sleep. I wish you could too. It must be so difficult not being able to take anything for your pains

I am not sure if it would work for you since you have a hard time with pain meds but did they ever have you try fioricet for a last resort migraine medication? Thats what I always use when nothing else works.

I really hope you find some relief! In the meantime I''m always here if you need to vent

Fioricet does give me stomach problems, but I can take fiorinal for brief periods of time. After awhile, it affects my stomach and causes pain and spasms. It doesn''t do much for my migraines, but does help alleviate overall body pain. Thank you for your suggestion.

 

[pregcurious]

Dear Marian,
I hope you feel better soon. I live in Maryland, and like you are stuck at home in these snow storms. I hope you have not lost power and have been able to take care of yourself.

Take care,
Preg

 

[risingsun]

Date: 2/9/2010 4:37:12 PM
Author: Niamh
Hi Risingsun,
I mostly lurk, but wanted to get on and tell you I am so sorry for all of the pain and frustration you are experiencing. I don't want to thread jack but I have celiac and earlier this year while I was pregnant I got a strange mutated form of strep that attacked my ear and eye. Anyways, I don't do well with pain medications and it took a lot of meds and very strong antibiotics to get the infection under control.I ended up in the hospital for a while, and was sent home with a pick line for iv antibiotics which I had to have 3-4 times a day. To top it off I was told I may lose my baby and that there would probably be many complications with her and she'd probably have to be in nicu for a while. Anyways, to make a long story short I found a doctor, Dr. Tennant, who does a lot with chronic health problems and pain. He was my miracle. I was completely deaf in one ear from the infection, and as far as I can tell all of my hearing has now been restored to it, I'm a musician so I am extremely sensitive to this. I still can't see out of one of my eyes and my doctors still don't know quite what its doing, it has improved and is taking a long time, but his methods and device the biomodulator has controlled my pain. He really helped me, if you are open to it you may want to consider looking him up on the web. He has been the only thing that has gotten me results. I have now been pain free for months, got off all of my meds much sooner than expected, and my baby ended up being fine. My mom has fibromyalgia and has had some good results with his device also. I am sorry you are suffering and hope you find your answer.

I am sorry that you have been through so much pain and illness, Niamh

I'm so glad you found a doctor who is helping you. You have been through such an overwhelming experience. My thoughts are with you. It's incredible, to me, how many PSers have been through so much with their health. It can feel so lonely and isolating. FWIW, we have each other. I found Dr. Tennant's website and will look into the biomodulator. Thank you for the suggestion.

 

[risingsun]

Thank you to everyone who has written with their support and asked for an update. The flu-like symptoms come and go. I don't think it's an URI, but I need to see my PCP. I have a number of doctor's appts scheduled over the next three weeks and need to fit in this one. I have to have bloodwork at the cancer center and then see my hematologist/oncologist a week later for the results. As long as there are no more bone marrow biopsies, I'll consider this a success!! I have follow up with my local dermatologist re: the melanoma and the MOHs surgeon at UVA, who removed the CA tumors from my face. Then the GI gets to examine me. By the time that all this is done, I'll be ready for another round with the pain clinic. This drives me crazy

My level of pain and discomfort change on a day to day basis. The fatigue, back pain, and some other sx do not. There are times that I would rather sleep than deal with how I feel. I guess I would say that things are pretty much the same. Sorry for the pity party. I do have friends who are very supportive. One of my closest friends is a psychologist and she refuses to let me isolate completely. Most of my friends are in the mental health field. DH has had a very heavy travel schedule lately. The snow has made it difficult for anyone to do much of anything.

Thank you all for looking in on me. I appreciate your concern. While I needed to stop working, it has really taken a toll on my lack of interaction with others

 

[kenny]

Marian, I'm very sad to read about your health issues and applaud you for facing it by bringing it up here.
I hope it helps a little to talk about it here instead of keeping it all inside.

 

[risingsun]

Date: 2/10/2010 11:50:35 AM
Author: kenny
Marian, I'm very sad to read about your health issues and applaud you for facing it by bringing it up here.
I hope it helps a little to talk about it here instead of keeping it all inside.

Kenny~It was Deb's suggestion that I talk about my health issues, which was quicky supported by many other PS friends. It has helped me to talk about it. I used to urge my clients to journal about their problems. As a therapist, I believe that it helps. For me, this is similar to sharing my journal with my friends.

 

[joflier]

Date: 2/10/2010 11:44:53 AM
Author: risingsun
Thank you to everyone who has written with their support and asked for an update. The flu-like symptoms come and go. I don''t think it''s an URI, but I need to see my PCP. I have a number of doctor''s appts scheduled over the next three weeks and need to fit in this one. I have to have bloodwork at the cancer center and then see my hematologist/oncologist a week later for the results. As long as there are no more bone marrow biopsies, I''ll consider this a success!! I have follow up with my local dermatologist re: the melanoma and the MOHs surgeon at UVA, who removed the CA tumors from my face. Then the GI gets to examine me. By the time that all this is done, I''ll be ready for another round with the pain clinic. This drives me crazy

My level of pain and discomfort change on a day to day basis. The fatigue, back pain, and some other sx do not. There are times that I would rather sleep than deal with how I feel. I guess I would say that things are pretty much the same. Sorry for the pity party. I do have friends who are very supportive. One of my closest friends is a psychologist and she refuses to let me isolate completely. Most of my friends are in the mental health field. DH has had a very heavy travel schedule lately. The snow has made it difficult for anyone to do much of anything.

Thank you all for looking in on me. I appreciate your concern. While I needed to stop working, it has really taken a toll on my lack of interaction with others

How many have you had?? I''ve heard their pretty awful. My grandma has polycythemia which is turning into a form of leukemia so she''s had to have 3 of these done in the last year - so far. I hope you get some good news!!! Do you think maybe some of the flu symptoms are coming rom the stress of everything your going through?

 

[risingsun]

Date: 2/10/2010 12:03:32 PM
Author: joflier

Date: 2/10/2010 11:44:53 AM
Author: risingsun
Thank you to everyone who has written with their support and asked for an update. The flu-like symptoms come and go. I don''t think it''s an URI, but I need to see my PCP. I have a number of doctor''s appts scheduled over the next three weeks and need to fit in this one. I have to have bloodwork at the cancer center and then see my hematologist/oncologist a week later for the results. As long as there are no more bone marrow biopsies, I''ll consider this a success!! I have follow up with my local dermatologist re: the melanoma and the MOHs surgeon at UVA, who removed the CA tumors from my face. Then the GI gets to examine me. By the time that all this is done, I''ll be ready for another round with the pain clinic. This drives me crazy

My level of pain and discomfort change on a day to day basis. The fatigue, back pain, and some other sx do not. There are times that I would rather sleep than deal with how I feel. I guess I would say that things are pretty much the same. Sorry for the pity party. I do have friends who are very supportive. One of my closest friends is a psychologist and she refuses to let me isolate completely. Most of my friends are in the mental health field. DH has had a very heavy travel schedule lately. The snow has made it difficult for anyone to do much of anything.

Thank you all for looking in on me. I appreciate your concern. While I needed to stop working, it has really taken a toll on my lack of interaction with others

How many have you had?? I''ve heard their pretty awful. My grandma has polycythemia which is turning into a form of leukemia so she''s had to have 3 of these done in the last year - so far. I hope you get some good news!!! Do you think maybe some of the flu symptoms are coming rom the stress of everything your going through?

I have only had one. That was enough for me to know that I don''t want another! It''s possible that the flu-like sx are stress related. Stress can affect all of the body''s systems. The neurotransmitters released during stress can play havoc with your health.

 

[gemgirl]

Date: 2/8/2010 11:40:37 PM
Author: risingsun
OMG, gemgirl, we sound like twins

I live in an area with limited resources, but I will check into your suggestions. I know that there is a TENS unit that can be implanted, but I don''t know if I am a candidate for that. My TENS unit is from the dark ages, so I can inquire about a new one. I no longer trust my driving for longer distances and regular trips, on my own, to a larger medical center would be very difficult. Thank you such much for sharing your story and the remedies and resources, which have been helpful to you. I''m sitting here tonight feeling flu-y and in pain from my back, knees and elbows. A migraine is brewing. DH is away on a business trip and we''re expecting more snow. It''s just me, the dog and the cat! I''m very concerned, as is my gyn, that I cannot take the osteoporsis meds that she has prescribed. My dentist has advised against them due to my jaw problems. Oh happy day

ETA: I just looked up the sx for CFIDS. I could be the poster person for it

I will definitely speak with my MD about it at our next appt. I have no stamina and am chronically fatigued. I have most of the other sx, as well. Actually, I''m not surprised. Thank you for bringing this to my attention

I wish we sounded like twins because we had similar taste in jewelry, oh but we really are there too because I love your wedding set . But back to the more serious stuff, I wanted to ask how long you''ve been handling all of your health issues. I wasn''t in such good shape in the beginning of mine. The first three years were the most serious for this weird combo of illnesses for me. All of my doctors were sure I had MS because my symptoms were so bad. I wasn''t able to go out anywhere alone or drive for that matter because I had no sense of balance or space and distance. I was only able to go out on my husband''s arm because I couldn''t even walk a straight line. I''m more than fifteen years down that road from that now, I think that''s why I roll with it all alittle better than before, and my husband understands it better now too which helps. My longest migraine in the beginning days of my CFIDS was seven weeks, so I know how you feel.

I was diagnosed with Osteoporosis a few years before I was finally in menopause and I''ve been tortured with every single Osteo medication available, but haven''t rebuilt any bone and was horribly affected by all of them.
My digestive tract hasn''t been able to tolerate any of them. They all stripped down the lining of my stomach and intestines, even the IV meds. Right now I''m on nothing for my Osteo and my bone density tests are getting worse. I worry a little about that because I''d like to remain active and doing things, but my Endo keeps reminding me that if we don''t find something that I can tolerate soon, I''m going to wind up in a wheelchair to prevent fractures. I can''t and won''t picture myself that way. They finally took a vitamin D test on me and found that my D levels were in the toilet. I was never going to metabolize those Osteo meds in the presence of such low levels of D. Torture for nothing. Now I''m taking 2,400 mg of D a day plus calcium and I''ve joined a gym which isn''t working out so well yet, but I''m determined to make that work too. I''m experiencing post-exertional flu like illness for a couple of days after each visit to the gym, but I''m not going to let that get to me. I''m going to do my best to plow through and recondition my body.

I know you feel like you have no stamina and are tired all the time, but don''t allow that to stop you from doing as many normal things as possible. A few easy do at home things that help me even to this day- stretch every day to the fullest extent of your ability. Don''t allow your muscles to shorten because that will increase your pain. Concentrate on stretching your neck slowly, that believe it or not, will help with your headaches. If your husband can learn some soft tissue massage techniques? That would help a LOT. If he can learn to get his two pointer fingers up under the base of your skull and pull muscle knots and tension downward away from your skull? That will lessen the intensity of your headaches. We learned soft tissue massage and how to do trigger point work on each other from being in PT for so long and we use it almost everyday. You can probably find a ton of info on line about soft tissue massage.

Do you take any supplements? Vitamin E helps to make connective tissue more elastic. Pynogenol and high doses of vitamin C will boost your immune system. Royal Jelly, which I love, improves my energy level dramatically. My latest fave and something I''ll probably take forever? Astragalus. It improved how I felt everyday almost immediately and when I get sick from a cold or bronchitis, it''s not as bad as it would have been before. Something that is used in Europe by doctors for stomach and intestinal spasms that''s not used here is enterically coated peppermint oil. I''ve been taking it for years in lieu of prescription anti- spasmodics.
It works just as well. I will take anything natural I can take, just not to get hooked into yet another prescription.

I hope your visit to the hematologist goes smoothly and without cause for concern. You will remain in my prayers. Two of my doctors wanted me to see a hematologist "immediately". They got so freaked out over some of my blood work, but my blood work permanently changed many years ago because of Mono, chronic reactivated EB virus and now the big whammy- CFIDS. When I asked if there was anything that could be done to change my bloodwork back to normal if I went to a Hemo? They said no, we don''t have anything that can help as of now. So I didn''t go.

 

[somethingshiny]

For any of you who are trying to manage pain or other sx with exercise, please join us on the Healthy Lifestyle Forum. There are many levels and activities discussed and it''s VERY supportive!!

 

[whitby_2773]

marian and gemgirl -

prayers for both of you today.

xo