Gwi Muscle Pain Questions

[Navigator]

For you guys and gals with muscle / joint pain. Do you find yourself having to stay sedentary in order to keep your pain levels down? The doctors want me to exercise and I try to explain to them the situation that I am in and they appear to be clueless. Also, are any of you guys experiencing something like I am. I can pick up my chihuahua which weighs about 7pds and cradle him in my left arm for about 15-20mins while I am outside talking to my neighbor across the street. When I put him down my arm muscles are sore, but the following day (and 3-4 days after that) my arm will be in so much pain that my arm feels like it is broken. I told a VA doctor about this and his reply was "Don't pick up your dog" Anyways, while I experience pain no matter what my activity level is, I noticed something strange about my situation.

I began paying attention to my severe pain events and everyday aches and pains that are consistent with this illness and have determined the following: If I exercise (ride my bicycle) or do work (turn a screwdriver) I end up with that normal burn pain that one would normally feel from normally working out or working. What I find different is that the pain last 3-4 times longer than what I remember that it should. Either way, I do not get debilitating pain from from such activity eventhough I do experience what I would consider normal pain levels, maybe slightly higher than what I would remember, but nothing that puts me out of service.

On the other hand, if I strain continuosly like holding my dog or standing on an incline for any period of time. My pain level goes to a 10 or beyond and I am out of service. I loose the use of my arm, leg, ankle or whatever muscle I am straining at the time. A perfect example is when I have sex. If I am on my knees with my toes pointing down to the bed, about half way through, I can't enjoy it anymore due to pain levels and if I try to walk, I am in severe pain and have to use a walker. It takes me about 3-4 days just to recover from sex.

I had a friend come visit me and we walked up a hill for about an hour looking for arrowheads. I had to come down due to ankle pain and for the next week, I was in a wheel chair due to not being able to put any pressure on my foot due to the severe pain levels from straining my ankle muscles/tendons to remain level on the incline of the hill.

Just wondering if any of you guys have noticed that the pain symptoms are worse when your muscles are strained for long periods vs. normal muscle movement.

[Guest]

You might want to look into having fibromyalgia or non-diabetic nerve pain (peripheral neuropathy).

[kevin4998]

I can relate to this very well, and just like you... the VA and others usually dismiss all together or say its diabetic neuropathy. I don't agree with any of these, but what do you do? I have addressed it many times to VA and Non-VA and the results are always the same. I know I am no doctor, but I do know enough and had read enough to know that this isn't normal nor is it diabetic neuropathy as I do experience this, but WHAT you and I both are experiencing is not the same as diabetic neuropathy. I wish it was, then I could rest about it. I have pain in my left foot so bad that I have to wear three pairs of socks for cushioning. At first one WOULD suspect diabetic neuropathy, but after reading allot on it a couple of dozen times I don't believe it is that. It just doesn't fit no matter how many times I have tried to see it as diabetic neuropathy. Its not a .. um cant think of how to spell it, neuroma either. They did do an examination for that (and x-ray), and I have my own "private" nurse conduct the "clicking" test for it. So, I really do not know where to go from here on out with it as it "pain" does not fit anything I have looked at. This pain is extends across all Metatarsal-phalangeal joints and feels like I have a "ball" of sorts on top of those joints (in particular at the second joint area). It is so painful, that I have to keep off that foot more and more. When not on the foot I still feel needles from all these particular joints but also out towards my big toe, with burning sensation as well. Allot of tightness when I curl my toes. I am only experiencing of this only on my left foot. Spinal Stenosis at the L5-S1 area which shoots pain in particular down my left leg sciatic nerve when I stand/walk for any particular time especially on cement or otherwise hard surface. I have had the test in my foot with the needles and electrodes and it came back negative for anything. I mention this issue (foot) to relate towards what you mention.. but I do have other pain issues as well that just can not be readily explained and knowing they can not actually find what is causing the foot pain precisely, then I do not want to even try to explain the random pains I do have.. I see no point in it. I should note, that these random pains do not fit Fibro (what ever) either as the pain is not specific to areas for which the Fibro (what ever) areas they test for.. I think 12 point test.

Edited July 3, 2015 by kevin4998

[TALON II FE]

I do not have diabetes; let's get that out there first. To me, if it is the same thing, diabetes may complicate it, but is not causal. I have been told peripheral neuropathy, myofascial pain syndrome, chronic pain syndrome (psychological- "in your head") and a laundry list of other nerve issues, probably not worth listing out. Kevin, I have that exact same tightness curling my toes, especially my right big toe, which is also very painful to the touch, also especially at the second digit. I have not even addressed that particular issue with docs, because it is very frustrating dealing with them on these issues, they sometimes act like you are making it up, and it wears you down. On my left foot, though, the nerve is now dead since last year. It went from a weird numbness and tingling to completely dead in 2 months! I had a awesome neurologist then, who PCS'ed last August, and now I feel like I have been thrown to the wolves when I go there and avoid bringing up any new issues and just get my injections quarterly for Migraines and don't talk about much else. I feel like they think I am somehow wasting their time and I feel like they are overtasked (I was overtasked many times in my career) and don't want to or cannot take the time to try and figure it out. Last time I was there I heard another doc (O-4, Army) in a nearby office talking about wasting resources on Vets and Retirees. Very upsetting for me and I tried to get moved off base without raising a stink but no such luck. I am a little ashamed I did not confront him, but with PTSD, I try to avoid those types of confrontations unless my anger gets the best of me so I (and my family) dealt with a depression spike for the next week instead.

I get pain that doesn't make sense constantly. My spinal issues are mostly cervical, btw, which rules out the Lumbar connection for these issues. I have a bulging disc at L4-L5 but I have had it for 20 years and it doesn't give me too many problems. If I stand more then 2-3 minutes in one place, my right leg goes numb and both legs are tingling. When the nerve in my left leg died, and I went to the follow up with the new doctor, they basically said it wasn't an "important" nerve and would not even do imagery on my ankle to see if it was an entrapment issue, stating that, even if it was, it wouldn't be advisable to do surgery on the ankle anyways. But what if it is not an entrapment and that came back clear?...no response from him. Basically, I think they are also so busy and micromanaged that only the more exceptional docs are willing to buck the system to give quality care. My theory from my own research is that it may be related to chemical exposure, burn pits, etc. I feel like they are more than happy to track these things thru the burn pit registry and other similar programs, but are not really looking very hard into actual causes and treatments because it is cheaper to let things play out and be remorseful about it "after" it sorts itself out "naturally" and then talk about how they are going to mitigate the issue for "future generations". A pretty dismal view, I know, but there has already been a precedent for this, and it saves them tons of money.

Edited July 3, 2015 by TALON II FE

[k5one]

Sounds More Like Chronic Fatigue Syndrome than Fibromyalgia, One of the symptoms that makes CFS and Fibromyalgia different is the extended amount of time that it takes to recover from exertion. See a rheumatologist or talk to your primary physician about CFS.

I recommend using a private physician for diagnosis for your problems. Get information about Gulf War Illness, CFS, Finromyalgia, and IBS, Talk to a private physician and explain it to them prior to them making a diagnosis. Some VA physicians will try to diagnose all the symptoms, which may cause you problems with applying for benefits from the VA.

Your symptoms sound typical of Gulf War Veterans.

[DocC03]

Please Please Please....If you are having these symptoms go see your doctor. Ask them to do a CPK-3 Blood Test. Maybe everything will be normal with the test.  But from a medical standpoint an elevated CPK3 level will help to narrow down where to look. There have been a few cases of elevated CPK levels in vets with GWI.

Higher-than-normal CPK-3 levels are most often a sign of muscle injury or muscle stress. They may be due to:

• Crush injuries
• Muscle damage due to drugs or being immobile for a long time (rhabdomyolysis)
• Muscular dystrophy
• Myositis (skeletal muscle inflammation)
• Receiving many intramuscular injections
• Recent nerve and muscle function testing (electromyography)
• Recent seizures
• Recent surgery
• Strenuous exercise

[TALON II FE]

I have been seeking treatment for this for 5 years, thus all the varying diagnoses.  3 of those were still on Active Duty and the last two on Tricare.  They step in the hall, look at their phones for the answer, and that's it anymore.  If it is not readily diagnosable from their phone, well...then they move on to the next patient bc my time is up.  Oh, and I drive 23 miles each way for this when I almost never leave my property and I can ONLY see them for two issues at a time.  I am 100% scheduler, I have a lot of issues!

  Heck, I am 70% PTSD and I have been trying to see a Psychiatrist (at least 3 separate referrals) for 9 months and I cannot even get an appointment.  Tricare keeps trying to send me to doctors that either have no availability or they do not treat vets with PTSD (I know, right?).  At this point, I am considering cancelling my Tricare and going on VA medical, as scary as that is, due to an inability to get to any treatment besides seeing my PA for the sniffles.