... only walk for a few minutes and I start to feel an intense pain in my legs and lower back. When that happens I must sit down until the pain eases then I can walk again for a short time.I also suffer from chronic fatigue.Some days I feel like I can barely take care of myself. Is there anyone out there who feels the same way? Please share your situation with me
There is quite a few of us who are like you so be prepared for a lot of responses!
You don’t state what medications you are on, this will help us a lot. I will get straight to the point. Have you ever been examined for Myofascial pain (MP), because this is most likely to be the cause of your limited ability. Often I am just like you. All too often someone with Fibromyalgia (FM) also has MP which goes undiagnosed. I have both FM and Chronic Myofascial pain(CMP). CMP is what MP becomes if it is not treated appropriately. There is no cure for CMP, but there are treatments. Signs and Symptoms of MP & CMP
-Muscles twitching. Often you can feel them but cannot see them. Aching and weakness of the affected muscle after the twitching pain as stopped.
- Pulling/tightening pain which often affects your ability to use or move the affected area.
- Jabbing/stabbing pain. This pain may be hot or not
- burning pain
-Electric shock type pain
The cause of these pains are Trigger Points (TrPs), the main component of MP & CMP. TrPs are nodules of tissue which form in some muscles, ligaments, tendons and the fascia. A trained individual can feel them. These TrPs cause a lot of pain and can restrict what you can do. TrPs can be treat with medication and specific treatment. Having FM makes any pain in your body worse, widespread and prolong pain.
If any of this sounds familiar you will need to have this diagnosed. A pain management Doctor can diagnose this or a Reumatologist who specializes in FM. Personally I would see the pain management Doctors, they can diagnose and treat the issue.
There are quite a few of us in the same boat. I've had it most of my 66 yrs, so in a way I have a slight advantage because my life has been made to conform to my disability. My biggest wish right now is to be able to take my dogs for a walk without severe back pain. You have to set smaller goals, and do them at your pace. Don't start out the day thinking you are going to do all this stuff, then not be able to do it and feeling bad about yourself. The hardest thing is that people look at you and don't see a problem so they condemn you. Most people don't see the signs of suffering unless it comes with a cast and crutches. This is harder for me to accept I think, because I do see them, but I was trained for over 45 yrs to do just that, as a nurse.
I couldn't agree more with both EmeraldGirl and kaismama. They have spelled it out perfectly! EG brings up a fantastic idea, get your rheumatologist to determine if you've Chronic Myofascia Pain, that is a huge diagnoses and you and your doc need to know if CMP is indeed attacking your muscles/tendons/ligaments. CMP is so painful and limits what a body can do, as EmeraldGirl has indicated.
Also, kaismama's idea of setting realistic goals that are truly attainable with the pain we all suffer with is a great plan! (I need to adhere to this advice myself! : ) Meeting even the smallest goal can make us feel good, I know because my stainless steel appliances are gleaming from their recent scrubbing, so DO try to set very realistic goals that you can actually attain, even if it's one tiny thing a day.
I apologize, you didn't ask for advice, yet that's what I've done. I used to have days when I truly could not take care of me nor my beloved family and I must admit I still have those days. Days when dinner is out of the question, when a shower is a chore, when just dusting my furniture must be put off for another day. Days when a walk is not attainable, etc. So, I guess I'm trying to say that you are NOT alone! IMO, we all have those days, some of us have them every day of our lives since our diagnoses of FM.
Best wishes to you, Oceanluvr, I hope your pain and fatigue improves,
Hi folks, I'm an acupuncturist and I've been able to help quite a few people with fibromyalgia and chronic fatigue. Unfortunately I can't do any needling (and would have to train an acupuncturist in you local area for a proper technique and needling sites), but the supplements I give to people might help. At the very least they're inexpensive to try.
First, I would highly suggest trying N acetyl cysteine (often abbreviated NAC or spelled N acetyl l cysteine or acetyl cysteine) 600 to 1800mg daily. Start at the lower end and find a dose that works for you. This should cut the edge off things and decrease the frequency and severity of attacks.
The second one to include is lithium orotate (or lithium aspartate). You'll likely have to find this online, most health food stores don't carry it. If you're currently taking an antidepressant or prescription lithium check with your physician first before taking it. The lithium orotate (or aspartate) clears the body quickly and never causes a toxic build-up like what is seen in prescription lithium. It always comes as 5mg of elemental lithium bound to an amino acid. It's quite safe to take around 30mg daily if needed. Take one, if it doesn't work try two. If that doesn't work try three or four. No one is sure of how lithium works biochemically, but it seems to be a vital trace element as in animal studies with lithium deficient diets they all became infertile. It'll definitely help with any stress, cut down on the frequency of attacks, and can help with any sleep issues.
Third I would suggest manganese. A dose around 10mg daily seems sufficient. This helps with controlling the production of oxidative compounds in the body.
Fourth is selenium. Around 100-200mcg daily seems to be a good dosage. This plays a role in formation of antioxidants in the body.
Unfortunately with chronic fatigue it does seem to require needles for any resolution/relief, fibromyalgia seems to respond quite a bit better with the supplements. Although it too does require needles for complete and long-term resolution (but in both of these it has only been my experience. I could be wrong, give it a try and see if it works for you).
Science of fibro and chronic fatigue:
After going through the available data I've found there to be deficiency in several key elements in blood work. Chiefly manganese, selenium, and sulfur bearing amino acids. There are likely others at play, and I'll detail some of those below.
The body's immune system is more than just white blood cells. Individual cells will mount their own defense in response to pathogens, heavy metals, and toxic chemicals. They do so by releasing nitric oxides, superoxides, and peroxides to neutralize the pathogens and oxidize heavy metals for their elimination. In people with fibromyalgia the nitric oxide (NO) combines with the superoxide (OO-) to form peroxynitrite (ONOO-). This in turn damages the tissues local to the area causing a release of more nitric oxide and superoxide, resulting in a viscous cycle of inflammation and pain. In people with chronic fatigue the cells actually shut themselves down, in a manner of speaking, to prevent this damage from occurring. This is evidenced by the higher levels of heavy metals seen in people with chronic fatigue (the nitric oxide and superoxide system normally oxidizes heavy metals to neutralize and eliminate them from the body).
In "normal" people this system is controlled by a tripeptide called glutathione and the superoxide dismutase system. Glutathione has been shown to be in dramatically reduced in people with fibromyalgia. Glutathione both neutralizes and reduces the production of these oxidative compounds. It is widely believed that rate limiting step in glutathione formation is the presence/amount of cysteine (a sulfur bearing amino acid) available. Selenium also plays a crucial role in it's formation, and, I apologize, there is one other mineral that escapes me at the moment, which is needed as well. *cysteine is not something that the body normally takes up. So a person can't supplement with straight glutathione or plain cysteine. It passes right through the digestive tract, by adding an acetyl group to the cysteine amino acid it becomes water soluble and can be assimilated. In a normal situation an amino acid called methionine is used by the body. B12, B6, and folate are required in order for methionine to be converted to cysteine. Having insufficient levels of these important B vitamins might also be playing a role in the condition. Alpha lipoic acid has also been shown to increase glutathione levels in lab studies.
*on a side note both glutathione and N acetyl l cysteine can chelate (bind to and remove) heavy metals in the body. This may be helpful in many cases.
The superoxide dismutase neutralizes the superoxides and it requires mineral cofactors to work properly. Chiefly manganese/iron in the mitochondria and zinc/copper in the cell's intracellular fluid. Without superoxide dismutase, the superoxide can form unchecked in the body.
When people come in and see me I use the needles to "reset" the body in a sense. It works immediately with any fibromyalgia pain gone after the first treatment. This relief typically only lasts for a few days and successive treatments (generally 5 to7) are needed to keep it at bay while I basically throw everything and the kitchen sink at it supplement wise to raise the deficient nutrient levels. Keep in mind everything I've stated with nutrition is only what has been discovered so far. There may be other important nutritional elements vital to the proper functioning of this system that haven't yet been identified. I usually use one of those really high-end and somewhat pricey multivitamin/multimineral/multinutrient supplements along with dietary advice (like eat plenty of eggs, which are about as near a complete food as you can get). Complete relief of pain usually lasts for at least 6 months, with most people not having to ever come back for treatment.
For Chronic fatigue it takes a similar dietary/nutritional supplement approach, but a slightly different needling protocol. Patients usually experience greater sustained energy after the 5th treatment, and by the 7th I have seen long term results with several months of improved energy.
Will you seek out any of the supplements that Embilic has suggested?
Do you, currently, take any vits or supplements for your chronic fatigue?
Hi again Oceanluvr,
Please accept my apology for getting off the topic of your very important question.
I forgot to ask you if you are taking anything for your CFS (Chronic Fatigue Syndrome)? There are a few meds that deal with CFS, such as Provigil or Nuvigil... oops, may have the name of those meds wrong, but my question still stands, ARE you taking anything for your CFS?
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