What's going on with my body? More pain than ever before

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Jun 11, 2011.

  1. rosemarie

    rosemarie Member

    Pick a spot on my body and it hurts, just running my fingers on my arms there are spots that when touched gently that really hurt. Today while shopping I was riding in an electril cart when suddenly my right arm started going numb and tingley, my ribcage hurts for no reason. every place I touch on arms or legs hurt to the touch. What is going on with me? I don't ever remember havng pain so bad and nothing seems to ease it.

    I try to walk more but than makes my knee's and legs ache for days, holding my grandbabies makes my arms ache, of course it does not help that one weighs 22 lbs and is 8 months old.
    now my fingers are hurting and my joints are tender. Touch the sides of my knee's elbow's or just pushing on a spot on my arm hurts to the touch. I am falling apart.

    I really am not explaing this right I just can't find the right way of saying what is happening to me. I am about in tears now because of this never ending pain .
    I wish I knew how to explain this better.
    Rosemarie
  2. kat0465

    kat0465 New Member

    Sounds awful Rosemarie, have you called your dr?? Sometimes a change in weather makes the pain worse. Also maybe you walking more has put you in a flare.

    Exercise unfortunately will do that too. My ribcage hurts really bad. It's called costocondroitis.

    Call your doc and see what he thinks. Try to take it easy till this passes. Rest and pacing will help. I know that's tough tho :/ especially with little ones around

    Try taking an Epsom salt bath, some times that eases the pain a little too.
    Hope your better soon!

    Kat
  3. hopabout

    hopabout New Member

    Rosemary, I am so sorry you suffer from this horrible mess... I have since 1981 and you don't hve to explain your pain... I understand things like not being able to touch your skin or hold a child. It's horrible I very well know.

    I have studied genetics for 19 years. Many members of my family have fibro and some cfids combo... I also studied over 600 subjects apart from my family and found their similarities.

    We have some serious problems in what they call Transcription factors. Long story short A is not telling B what to do. We have some pretty nasty hereditary in the collagen department and some in the iron department. Believe it or not, malaria and a little bean like a lima bean has done some real damage in our bodies.

    All that said. our veins and muscles do not have all the components they need to work properly and when there is barometric pressure usually low, they get in an ongoing circle and don't seem to want to straighten out...

    I can't change the barometric pressure, but I can make some suggestions that really help me that you might consider or talk over with your doctor.

    I take low dose folic acid. I also take B12 and do it with injections but with pills its important it is Methylcobalamine... it sort of skips over one of those transcription spots. Regular B12 has to be processed by our sick bodies. Our liver is our worst enemy. For me, I take Milk Thistle.. it does not show any immediate aid, but it sure helps keep that liver in better shape for the long run. SAM E is another that I think for me is very important. To most people its just a supplement in the store... but to the metabolism of our body it is a very important factor in these illnesses.

    Recently, here on pH and in many other areas of the net there was a paper regarding Methylation. If I had to say any one finding and advancement in fibro and cfids has occurred, it would be that paper on Methylation. These research, medical and genetic doctors have much smarter brains than I have and they have come up with the fact that we cannot methylate the way we are supposed to do. Its an ... enzyme process... sort of. They have come up with or will soon a specific supplemental package that will help our bodies do what they are supposed to do. If I can afford that package, I will buy it way over top of any Rx drug on the market that masks symptoms and you never get better.

    In the meantime, you can do several things. I don't eat any breads or gluten products, I don't consumer any milk or cheese with casein (cow milk) I am very careful with my foods and try to eat my protein first, then the rest of my meal in a few minutes. I don't mix proteins with other foods immediately.

    I write down (or use to) every single thing that happens. I clock the moon, the weather patterns, especially the wind, barometric pressure and look at the weather map to see what is coming tomorrow or day after. Trust me, it will affect your body.

    I make sure that I have magnesium malate available to take at the first sign of a weather front. It is my best friend.

    I am very careful to make sure I don't eat much sweet especially fructose... most things I eat or drink have splenda in them. Its my choice.

    And, you cant cover your whole body but when I have an area that is very very painful and it wont stop.... first i rub it with icy hot or something similar. got to heat it up. Then, some lambs wool.... that baby soft fabric that is like a plush lamb. I bought some socks and cut them into pieces and sewed them . I actually TAPE them on the spot that hurts once it has been rubbed. Then I put the heat on me and wait. It works wonders especially on my ankles and neck.

    This is an evolutionary disease that accompanies many of the neurological disease involved in dopamine. The pathway is the same as that of Alzheimer's and Parkinson's Disease and involves the same components as Bipolar and ADHD. The secret is going to be to find the correct transcription and there are thousands.. Somehow when Mom and Dad got together the transcriptions did not work properly. Our circadian clock is involved from the time we are created. Its not about a virus or a toxin... its about WHY we are set up to recieve them and why we react the way we do. If you belong to a support group or have one near you
    just ask some of them to list the other diseases in their family... begin with mom's side then dad's. When you have asked about 20 people they will begin to give you the same identical answers. This is not hard.... it just takes years to figure out.

    I have been able with drastic measures to get out of a wheelchair, I stopped fibro and cfids for 5 years in a foreign country where there were no pressure systems. My body healed but there is no cure. Please check out the methylation studies here on PH.... there is hope they can find a way to make us transcribe the way we are suppose to.

    I was severe fibro and cfids and still suffere with a horrible thyroid hormonal system and the fatigue but my fibro pain is mostly quiet after learning all the things it takes to straighten out the transcription processes that have gone wrong. Good luck to you... I pray for well days.

    I hope I helped you in some way.
    HOP
  4. mbofov

    mbofov Active Member

    and affordable. Richvank has developed a simplified methylation protocol, which I will copy below. Also, someone named Freddd on the Phoenix Rising has developed a B12 protocol which is similar to Rich's but has a few significant differences.

    Some 2/3 of the people who try Rich's protocol do well on it. However, I didn't. It made me tired and feel sick, and I never got over it. However, I am doing well on FRredd's protocol. One of the most significant parts of Freddd's protocol is to avoid all folic acid and folinic acid, and instead use l-methylfolate (Metafolin brand name - Solgar makes one) as well as methylcobalamin instead of hydroxocobalamin. I noticed you are taking folic acid - you may want to change this. Folic acid is a synthetic form of folate which many people have a difficult time converting into a usable form.

    So you can look at both protocols, and give them a try. Rich recommends trying his for 2 months. I'd suggest that if you don't feel better after 2 months on Rich's protocol, then give Freddd's a try.

    Here's a link to Freddd's: http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

    And here's Rich's protocol:

    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROM (March 30, 2011 Revision)
    Rich Van Konynenburg. Ph.D.
    (Based on the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. General Vitamin Neurological Health Formula [2]: Start with one-quarter tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
    3. MethylMate B [4]: 3 drops under the tongue daily
    4. Folinic acid [5]: one-quarter capsule daily
    5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

    All these supplements can be obtained from http://www.holisticheal.com.
    The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
    Phosphatidyl serine can lower cortisol levels. Patients who already have lower than normal cortisol may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
    [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
    [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
    [5] Folinic acid is 5-formyltetrahydrofolate. one-quarter capsule is a dosage of 200 mcg.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
    [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.
  5. JewelRA

    JewelRA New Member

    I just read and responded to your other post about talking to your rheumy.

    You mentioned that you have been decreasing your narcotics. I feel even more strongly since reading this post too that you are probably going through withdrawal pain. I have BTDT. It is awful.

    You may want to discuss with your rheumy going more slowly, replacing the narcotics with something else for pain, or even stopping the reduction for now until you level out.

    You definitely need to let him/her know how this is affecting you. You shouldn't have to suffer this much unnecessarily.
    [This Message was Edited on 06/19/2011]
  6. rosemarie

    rosemarie Member

    I thank you all for all the suggestions and advise that you have shared with me. I have been to my rehmuy again and he wants to reduce my msir from 30 mg x4 daily to 15 mg x 4 daily. I think I am going to call him back tomorrow and request that he not reduce it till my next visit in 2 months as I am starting to believe that the added pain is from withdrawal .

    HE also wants to put me on " one of the "fibro drugs" Cymballta , Savella, Lyricia, EffexorXR, ect.

    I told him I dont' want to try mew meds due to the response my body has , 99 % of the time I have tried antidepressants meds I have had strange, weird, unusal reactions, not the normal side effects.

    EVen now he put me on Prilocet,{stomache med} and I don't like how it is making me feel just after two days. I have bad stomache cramps , nausea, feel like i have the stomache flu, I ache all over but not sure that it is from this new med.


    Then I went and looked up the fibro meds on my insurance site only to find out that the above meds are a tier 2 or tier 3 . Each tier gets more spendy, Tier 1 $5.00 , tier 2 $58.00 ,tier 3 78.00. I can't afford the cost of either tier 2 or teir 3. Right now with the 5 meds I am currently take - I pay $37.00 a month plus a $35 .00 co -pay every other month.

    Of the fibro meds I have seen in action in my own family I will not even consider taking it , it was Effexor and the person had gone thru months of slowly reducing it and when they were done with it the reaction was horriable and they were hospiptlized. Now I know that any fibro med I would be put on < I would not be going off of. But at this time I can't afford them any one of them.

    So tomorrow I will call my rehumy and ask about not reducing my msir for a while due to the added pain I have been in this past weekend . He does not know yet that I can't afford any fibro med, so I need to tell him that and hope he understands why I am unable to take them.

    I will have a chat with his nurse and hopefully I will be able to have the doctor call me after hours and explain to him what is going on. I can't even afford methidone as it is a tier 2 medication. It seems like I can't win for losing. When it comes to medications.

    Note: My hubby can't assist me in paying for doctor, dental or scripts due to the fact that he has to pay out of pocket for his insulin pump needs . His ins, is not a great one and has a really high deductable, I am not on his insurance for that reason, it would not help me as mine pays better both in scripts and co-pays. Neither of us have dental insruacne so we are up a creek there.

    Between the added pain from our extremely wet spring and wet winter, my arthritis is flaring as is my fibro, the weather is really strange here in Utah , I am in teh Northern part of the state and we have had more snow than in the past 30 yrs and the wettest spring in that same time. We have been getting rain/ snow every few days , the longest warm patch sent most of the state in to a flood alert and many people have lost homes, farm lands ect due to flooding.

    AFter watching the weather reports it shows that we are getting storms every 3-7 days some weeks we get 3-4 storms that put more snow in the mountians and rain in the valley's. The tempture drops with each storm. The barametric pressure changes quickly and often. Between the cooler than normal temptetures and all the rain and snow, my body is thrown in to a pain full flare from arthritis , fibro and mps. I can't win in this situatiaon.

    This year has been very stressfull for me due to my mother's illness and her hospital stays, and the two months she has been in rehab , she came home yesterday.

    Now my sister and I are going to have to take care of her making sure that she eats has food where she can get it, assist her with bathing, execerising, PT, and general care.

    I hold medical power of atterney, and after this last bout of penumonia I learned that there is a reason she has a DNR. She weighs as of yesterday 91.7 lbs, if she were too need cpr to keep her heart beating it would kill her. So she will not get it. This is a hard and painful desision for me, I will be following her wishes .

    She is 83 and is not in the best of shape, she is living in her own home with my daughter and husband and two kids. They do their best to help her out but both work full time and that leaves MOm alone and not able to do every thing for her self.

    So hopefully my sister will help out more and work with me so I don't have to be the one who drives her to the doctor, shopping, general assisting her with making her bed and all other needs she may have.

    Sorry about the rambling on and on. I do thank you again for all your thoughts, and helpful suggestions. IT really made me feel better as I know I am not so alone.

    It is hard here in my family as they really don't get fibro, mps of even the arthrits, that it leaves me feeling fatiqued , in a lot of pain, hard to lose weight, can't sleep at night, so often my daughters when my girls will call and want to talk with me I am so tired that I am still half alseep and don't make scense .

    I some time slur my words as I am so fatiqued that my mind does not work stragiht. I have been known to doze off while talking to them both on the phone and when they are here.


    The fatique is so hard to recover from, it is hard to get my brain working when I have been sleeping . I don't mean to make excuse's this is just how I feel. I hate feeling like I have ran the 4 minute mile in two minutes and like I have done several rounds of dance exercise that is really fast danceing. Brain fog can't remember the name of the exerise . Sorry about that.
    Thanks again for every thing , I didn't mean to write a novel.
    ~HUGS~
    Rosemarie


  7. JewelRA

    JewelRA New Member

    {{{{{hugs}}}}

    I am so sorry you are going through this. It is very, very difficult I know. It is hard being on this merry-go-round with meds we are forced to go through.

    I think you are definitely doing the right thing in asking him to slow down on your med taper.

    Have you tried any of the "old school" meds for fibro, that are not necessarily "fibro meds" per say? (I'm not a big fan of the new "fibro drugs myself - had a bad reaction to Effexor). Such as klonopin, neurontin, or some of the older antidepressants such as Elavil or trazadone? The reason I ask is 1) they are usually much more affordable and come in generic and 2) they can often be taken in minute dosages or even cut into halves or fourths, unlike most of the newer drugs which are control release and cannot be cut.

    I started out with 1/4 of a 0.5 mg pill of Klonopin and worked my way up from there as needed. I still only need 0.75mg a night. This minimizes side effects and safeguards you from crazy reactions, and even if you do have a bad reaction it might not be as severe or last as long.

    Also, have you tried any natural alternatives? I believe the most important supplement a person with FM can take is a good magnesium supplement.

    I'm sorry if you've already tried this route - I'm just throwing things out that I thought might help!
  8. chloe_s_mom

    chloe_s_mom New Member

    I certainly agree that walking might be increasing your pain - I find that minor movements can sometimes aggrevate my pain, other times, no. Go figure. Even things that are fun and exciting can cause an increase in pain. I figure that my nerves are getting too wound up and have trouble calming down.

    I thought that it was interesting to read one poster's response re. increased pain with a decrease in pain meds. My GP talked about that as a side effect for my pain meds.

    I also like the suggestion of some of the 'older' fibro meds, especially ones that can be split/divided, etc. I can't swallow pills (have a stricture) so I'm always looking for meds that can be crushed, chewed or divided.

    I've had good luck with a low dose of cipralex, as an anti anxiety. It can also be divided. That being said, I felt spacy when I first started it (I've gone on and off it several times over the last few years) and even on a low dose, my head feels odd when I miss a dose. Like an odd pressure.

    I'm trying out ultram and the BuTrans patch for pain. The amounts that I'm taking isn't enough for a lot of my daily pains, or new, breakthru pain, but I think that it helps to keep that pain level at a more manageable, less accute level.

    I hope that your appointment with the rheumy goes well!
  9. chloe_s_mom

    chloe_s_mom New Member

    I certainly agree that walking might be increasing your pain - I find that minor movements can sometimes aggrevate my pain, other times, no. Go figure. Even things that are fun and exciting can cause an increase in pain. I figure that my nerves are getting too wound up and have trouble calming down.

    I thought that it was interesting to read one poster's response re. increased pain with a decrease in pain meds. My GP talked about that as a side effect for my pain meds.

    I also like the suggestion of some of the 'older' fibro meds, especially ones that can be split/divided, etc. I can't swallow pills (have a stricture) so I'm always looking for meds that can be crushed, chewed or divided.

    I've had good luck with a low dose of cipralex, as an anti anxiety. It can also be divided. That being said, I felt spacy when I first started it (I've gone on and off it several times over the last few years) and even on a low dose, my head feels odd when I miss a dose. Like an odd pressure.

    I'm trying out ultram and the BuTrans patch for pain. The amounts that I'm taking isn't enough for a lot of my daily pains, or new, breakthru pain, but I think that it helps to keep that pain level at a more manageable, less accute level.

    I hope that your appointment with the rheumy goes well!