Severe Aches/Pains and fatigue

[buca45]

Hey everyone! I wish I could write this with a sense of wellness and strength, but I am the exact opposite of that.
First of all, a brief background on my life with HIV. I am 49 (50 soon), have been poz for 17 or so years and have been on a number of drug cocktails in addition to pain meds and testosterone. This severe pain and fatigue started around 7 years ago and forced me to go on SSDI, which I am still on. Previously I had been employed in a profession that required me to be on my feet and moving constantly. It got to the point that I could not get out of bed in the morning and doing the most basic of tasks became impossible.
Since I then had full coverage insuraNe, my doctor ordered a battery of every imaginable test only to find no viable cause for this debilitating pain. The only thing he did was to prescribe Hydrocodone (7.5 mgs) in addition to Androgel testosterone and Lyrica (300mgs twice a day) all to no avail.
I recently lost my insurance and and now depend totally on ADAP/Ryan White. I just had a complete physical two weeks ago and will be going back to him for the results on the 19th.
I should add that over these 7-8 years he has changed my cocktail a number of times thinking I had a bad reaction to them. Currently I am on Isentress 400 mgs., Intelence 100mgs., Epzicon, Hydrocodone 7.5 mgs X 4 per day, Androgel, Xanax 4-1mg tabs per day,and Lyrica 300mg X 2 a day. Prior it was sustiva, norvir, crixivan, prezista, combivir, epivir, retrovir, zerit, and reyataz (of course one at a time combined with others).
It seems no matter what I am on, no matter how many tests he puts me through (ALL of them) he just cannot find the cause of this severe pain and fatigue. It has gotten to the point that I cannot sleep more than 4 -5 hours a night and end up feeling like a truck has run over me at 4:30 am every morning. I do take the Hydrocodone and Lyrica and do feel somewhat better, enough to get up and move for a bit before getting achy and tired again.
Now I am at my wits end with this doctor. I tell him how bad I feel and now it seems he is just ignoring me. His last Diagnosis was Epstein Barr which he said there was no test or cure for...after telling me that, he just has ignored my pleas for something to help my pain. A few appts ago he even suggested I start working out and lifting weights...LOL...I can't even get out of bed so how in the hell am I to start a heavy duty work out?
Like I said, he ignores my pleas for help and glides over my telling him about it EVERY visit. I am beginning to feel as though this is all in my head!! Am I going crazy?
I am here to ask how you all deal with 1) this horrendous pain and fatigue and 2) how you get your doctor to listen and act to get me away from this unbearable feeling. When this all first started, he was all about getting me to be comfortable.  Now he just wants to ignore what I am saying and goes on talking about other things that have nothing to do with these pains and fatigue.
I am open to ANY and ALL meds that you have tried to help me regain the strength and relieve this pain. I have read here about Adderal and also am thinking about asking for either greater strength Hydro or some other kind of pain med...even as far as Oxy drugs. I don't care about dependance at this point as I would choose dependence over this pain and fatigue.
So, please, if anyone has gone through this with their doctors and got them to offer something that works, please pass along this info. At this point, and for some time, I have felt severly depressed from dealing with this endless pain. It has even gotten so bad that I feel suicide is the only thing that will help me end this suffering.
What do you say to get your docs to listen to you? I feel like shouting from the top of my lungs " HELP ME, HELP ME NOW, AND DONT WORRY ABOUT WHAT IS ADDICTIVE OR DANGEROUS!!"

[buca45]

I know it was a long post, but I really need help with dealing with this doctor. I feel like just going in and demanding something to help me deal with this pain!!!
Any ideas please?

[Assurbanipal]

Fatigue can be due to so many different things, it's hard to know what to suggest.

Have you read through the lessons section here on fatigue?  It goes through a host of potential causes and suggestions http://www.aidsmeds.com/cn/printView.php?page=/articles/Fatigue_10778.shtml&domain=www.aidsmeds.com

Hope you can find something that works
A

[MYSTERY]

Buca,

Are you currently being treated for depression. If not I would look into it. Depression can cause a wide range of problems, and can cause one to live a sedentary life style. It is very important for you to engage in some type of physical activity to regain your sense of well being.

You might also try speaking to a nutrition expert that can assist you in a proper diet. Supplements are also very important.

There is a large cross section of people who exhibit symptoms of chronic fatigue, depression, and muscle and joint pain.  People with chronic fatigue syndrome, fibromyalgia, viral infections or recovering from viral infections, nutritional deficiencies, immune dysfunction, low oxygen, intestinal problems, metal toxicity, chemical toxicity, and chemical sensitivity may all show symptoms of chronic fatigue, depression, and muscle and joint pain. 

Orthomolecular medicine is a system of medicine practiced by medical MD’s.  It is a system of medicine using non-toxic, natural substances, safe in a wide range of dose.  The main ingredients are herbs, vitamins, and minerals.  The following are orthomolecular ideas that can help alleviate depression, fatigue, muscle pain, and joint pain, as well as other symptoms that may appear.  These ideas are not to address any specific illness; rather these are common orthomolecular ideas for general symptoms of depression, fatigue, muscle and joint pain.  The doses used are considered mega doses and should be used in consultation with a nutritional specialist or orthomolecular doctor. 

1.      Consider supplementing B-50, 2-3 times each day.  The B vitamin complex control energy production, detox, protein digestion, and many other vital functions in cells that can increase energy and decrease pain.

2.       Consider supplementing folate acid.  A usual symptom of folate acid deficiency is depression and fatigue.  A common error in folate supplementation, especially when a person is ill and their illness may be contributing to their nutritional deficiencies, is to supplement doses that are to small for to short a time.  For example, in orthomolecular medicine folate acid can be supplemented at doses between 1-10 grams daily, for 3 months or longer.  You can get a laboratory analysis to determine if you are folate deficient.

3.      Consider supplementing vitamin B-12.  Vitamin B-12 has a reputation to boost energy.  Fatigue and depression are symptoms of vitamin B12 deficiency.  Vitamin B-12 has a reputation among orthomolecular doctors of high doses to gain improvement.  Doses of 2500 mcg and higher, daily or 3-4 times a week, are doses often used clinically.  Although vitamin B-12 can work in a few weeks time, it sometimes may need 2-3 months to demonstrate significant improvement. You can get a laboratory analysis to determine if you are B-12 deficient.  However, it has been noted that vitamin B-12 supplementation can improve energy, even when a person is not deficient.

4.      Consider supplementing 10-15 grams of vitamin C total each day, in divided doses.  Vitamin C boosts immune function, has been noted in studies to decrease pain, improves circulation, and many other functions that can help alleviate depression, fatigue, and muscle and joint pain.  It is usually noted that large doses of vitamin C are needed in ill people in order to gain such benefits as described.  One of the first symptoms of scurvy, a disease due to severe deficiencies of vitamin C, is fatigue and depression.

5.      Consider supplementing zinc.  Many times zinc deficiencies are noted in people with symptoms of fatigue.  You can get a laboratory analysis to determine if your zinc levels are low.  If they are you should consider high dose supplementation between 30-45 mg each day of zinc picolinate.  Consult with a nutritional specialist, since your sex, health, and body weight will determine your proper dose.  Zinc can boost the immune system.  The theory is that a less than optimal immune system can lead to muscle pain, and supplementing zinc can raise immune levels, leading to decreased muscle pain.

6.      Consider supplementing magnesium.  Magnesium is known to be involved with the proper working of muscle tissue.  Magnesium is necessary for the heart to work properly.  The heart is a muscle.   Often in fatigue, low oxygen levels or low energy in the heart muscle can be present.  Magnesium helps regulate the heart.  Improving the heart muscle will improve oxygen levels and increase energy.  Magnesium levels should be tested.  Often if magnesium is not deficient, then supplementation of magnesium will not alleviate fatigue, depression, and muscle and joint pain.

7.      Consider supplementing CoQ10.  This supplement increases the respiratory processes.  This enhances energy production in the mitochondria, the energy factories inside cells.  This can lead to an increase of energy.  In people with fatigue problems there are not many studies to show optimal doses.  However, in many other conditions of illness, often doses of 200-400 mg are used, depending on the quality of CoQ10.  It is important to consider dividing the doses into 3-4 doses each day.  The divided doses will help sustain the effect of the CoQ10 over a longer 24-hour period, thus optimizing its benefit.  Combining it with magnesium supplementation might best optimize CoQ10?

8.      Consider supplementing acetyl-L-carnitine.  Carnitine is needed to prevent toxic accumulation of fatty acids inside cells and the mitochondria.  It is needed to provide fat for energy production at the mitochondria.  The lack of carnitine to provide fat for energy metabolism can impair the mitochondria.  Thus after exercise or physical exertion fatigue, tiredness, muscle weakness, and other symptoms could follow the exertion due to low carnitine levels.  Acetyl-L-carnitine is an efficient carnitine supplement.  Orthomolecular doses of carnitine are often at 2 and ½ grams or higher, each day.  You should take carnitine supplementation in divided doses, to spread out its effect over a 24-hour period.  You should consider combining it with COQ10 supplementation Combining CoQ10 and acetyl-L-carnitine, at orthomolecular doses, 3-4 times daily can stimulate great amounts of energy production in cells.  Add the B-50 supplement and this may provide a dynamic energy protocol for ill people showing symptoms of fatigue, depression, and muscle and joint pain.

9.      Consider supplementing ginseng with G-115 extract added.  G-115 has been proven in studies to increase oxygen utilization and enhance physical endurance.  We have mentioned CoQ10 and acetyl-L-carnitine enhancing the respiratory processes of the mitochondria, leading to enhanced energy production.   Improving oxygen utilization will help optimize the production of energy in the mitochondria.  Ginseng with G-115 should be considered a supplement that can increase the effect of CoQ10 and acetyl-L-carnitine.

10.  Consider supplementing omega fatty acids.  The omega fatty acids are necessary for life.  They form the structure of many tissue in the body, they are needed to help produce hormones, the chemical messengers of the body, they help increase permeability of cell membranes, and many other functions.  If you are not getting the proper omega fatty acids in the appropriate ratios, decreased cell function may follow, which may explain the loss of energy, depression, and pain of many illnesses.

11.  Consider having a doctor evaluate your tryptophan levels.  Tryptophan is an amino acid.  Tryptophan is the precursor of the neurotransmitter serotonin.  Lowered levels of serotonin are connected with mood and depression.  You can supplement tryptophan directly, which requires a prescription or you can use precursors of tryptophan.  Infections, large amounts of bacteria in the intestines, and other conditions can promote increased degradation of tryptophan.  You need a doctor familiar with these kinds of problems to help balance low tryptophan levels. Tryptophan helps produce partial amounts of the vitamin niacin in the body.  If you determine your tryptophan levels are low, you need to consider supplementing orthomolecular doses of niacin.  Read the article in the overlooked cures section of this web site, entitled “Anti-Death Vitamin”.  It describes optimal methods to supplement niacin.  It describes the 2-decade study, called the Coronary Drug Project, which used a dose of 750 mg each day to get its fantastic results.  You might consider 750 mg of niacin each day, in divided doses, as a minimum dose.  Consider using the Coronary Drug Project as a model for niacin supplementation.  Again consult with a nutritional expert.  Starchy carbohydrates, such as pasta, potatoes, and so on, can result in lowering amino acid levels in the bloodstream.  However, starchy carbohydrates may increase tryptophan levels in the bloodstream.  Thus starchy carbohydrates, by inhibiting amino acids, aside from tryptophan, can increase tryptophan levels in the bloodstream resulting in production of more serotonin.  However, starchy carbohydrates increase tryptophan levels, they do not synthesize serotonin.  Thus, you also need to eat serotonin foods to replace depleted serotonin.  Some food containing serotonin are bananas, walnuts, avocado, cottage cheese and tomatoes. 

In conclusion there are many supplements, in the proper dose for the proper amount of time, that can enhance energy production in cells, can promote detox, can boost immunity, can improve circulation, can increase cell permeability, can help produce optimal tissues, improve the heart, and other functions that can help alleviate fatigue, depression, and muscle and joint pain, as well as many other symptoms.  Good luck.   

[antibody]

consider Methadone for pain management.

[buca45]

Mystery, in the past I have been on anti depressants (currently on a high dose of Xanax)  and am going to ask my doc this week to put me back on a med as I feel it is getting bad again. I think it is more that I am not able to live my normal life which is causing me to feel so drained and achy. Thank you so much for your very detailed response! I have in the past tried many of the things you recommended so I will try them once again.
I have been on methadone, morphine and oxycodone before which my previous doc rotated so as not to cause a dependence on any one med. I definately need to be on a stronger pain reliever as the hydrocodone just is not cutting it!
Again, thanks for all replies...they are very much appreciated!!

[Inchlingblue]

Carpediem98 has a thread in the Living With HIV forum where he mentions that he is starting on a new anti-fatigue drug............maybe you can check it out........

[buca45]

Hey all!!
I was finally able to communicate with both my nurse and doctor and between the three of us, I think we may have taken a big step towards ending this debilitating pain. After much debate, my doc gave me several options to deal with this issue.
Since I had done several days of homework on solving this issue, I learned as much as I needed to make a logical choice about pain meds. I chose to go on a combo of Oxycontin 20 mg. and Loritab 10mg. for now. I was to give this a try for one week and then give the clinic a call and tell them how I was holding up.
After three days of the combo I see some improvement in how I feel and boy can I sleep!! I feel an almost constant "high" and to me it is a welcome feeling! I think however, that I need to have him up the dosage of Oxy as the pain is still there. He did tell me since I had been on the Loritabs for so long (three years) that he would probably have to increase the dosage.
You know, as much as I realize how addictive and dangerous this drug can be, just the thought of being able to live pain free and able to function is worth the risk. I am not going to be abusing these drugs and I let both of them know I am not a junkie and that I really did need to be on something this strong. He had no problems prescribing them for me as his plan is to keep me comfortable, no matter how we do it.
I also received my first B-12 shot....why in hell did I not ask for these gifts from God before?? WOW I could actually move around and was even able to start conversations with my partner! I mean, I was SO fatigued and in so much pain that to even start or finish a conversation was beyond me. The energy lasted most of the weekend and I felt terrific. I was also told to ask for a shot whenever I thought I needed one.
So a huge lesson learned....ask and you shall receive!!
I know the fatigue issue is not solved, but I was satisified with this first step as I am feeling as though I want to live again. The pain was so severe many times I thought of going on the roof of my condo building and just jumping off to end it all. It was pretty intense!!
Thanks to all who offered advice and I will keep you all updated in hopes of helping others who are on the same situation I was in and feeling this terrible.

[AndyArrow]

Great to read you are finally getting some relief!!!

Hugs,
AA

[newt]

Good on the B12. The most commonly recognized micronutrient deficiency in HIV infection is vitamin B12 (according to Medscape). Long term HIV infection fucks your gut and this is where B12 is absorbed normally....

The painkillers are only helping with the symptoms, and long-term some kind of dose reduction is worth looking at cos they only mask whatever is happening and when they wear off...nuff said.

For me, cognitive behavioural therapy and exercise, even very modest exercise like walking, helped, but you got to get to the starting post eh?

Good luck

- matt

[buca45]

I hear ya Newt, but for me it was a circle of hell.
I can not even walk a mile without having to be in bed for a day in severe pain. I even cried last week because I could not do a thing...even straightening my arm was hell.
Believe me, I have had every type of testing to determine where this pain is coming from. During every visit for over a year (I go once every month) the doc and I spoke of what he thought it was and he did testing. Nothing came back that would tell him what was happening to me. As I said in the above post, he finally wrote it off to 1) Epstein Barr 2) My age - 50 3) long term HIV infection.
The point I was trying to make was that I could not get him to do anything about the pain other than the Hydrocodone - 7.5 X 4 per day. I was taking two before even getting out of bed and the other two around 5pm to make it til bed time. Now at least I have some relief and can start doing things around the house and maybe even some exercise. I know it is not the end all with this story, but to be nearly pain free is a HUGE step in this process.
I cannot wait until my next B-12...that shit was the bomb!!!
I am sure many here have gotten to this point in their lives with HIV that you feel there is no reason to go on any more. I was seriously at that point.
And before anyone suggests mental health therapy, I have done all of that for years and I did not gain anything from it. I just got tired of telling the same old stories with really no help or guidance from the therapist.
I don't know...the more I think about it, the more I feel this pain all over my old body. I am going to bed as I dropped the night's meds and I cant keep my eyes open anymore.
Thanks again everyone......

[texasangel071184]

i know you got the meds but as something else you can do hot bath really seem to help and if not a hot shower will do it seem to sooth the pain some.