New to the group could use some advise

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I'm 43 and got, what I thought was a mild case of shingles..the rash was on my back by my left shoulder blade, and the pain at the bottom of my rib cage again on the left. This was about 4/5 months ago. Now I'm finding the pain in my rib cage flares up daily, sometimes a continuous pain, other times it's like a repetitive stabbing pain. However I'm also finding that I am suffering with severe exhaustion which tends to last one or two days and also my leg muscles are very weak at the moment which is causing me a lot of discomfort. Is this all relatively normal?

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  • Posted

    Niki43,

    Based on what I have seen in post over the years, nothing is normal. I had a minor case of shingles 2-1/2 years ago and have constant pain on my left torso. The leg muscle thing you mention is of interest to me since within a couple of weeks after my initial rash I began to have numbness migrate through my groin down my left leg and partially in my right leg. The result was that my left leg is partially numb, foot to thigh, which has left me with a limp mainly due to the fact that I have little feeling in that leg but there is no pain in the leg. Don't know if this answers you question but thought I would relay the story. Additionally, like a lot of others I have gone through all the various drugs, acupuncture, laser, scrambler and other things without relief. I work every day and cannot tolerate the drug fog, I basically learned to live with it and when the pain gets too bad I rely on ibuprofen. I take it you are new at this and by all means my intent is not to depress you.

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    • Posted

      Thanks frankjs

      I too get numbness on my feet and around the area of the pain which I put down to the whole neuralgia concept although my doctor didn't seem to know about it. Luckily the pain is bearable most of the time just extremely annoying! It's the weakness in my leg muscles that is getting me down and the exhaustion..I haven't had time to read other posts yet although I notice through browsing that most seem to have facial shingles rather than torso..however it is nice to have a group to talk to as it's such an invisible illness for someone not experiencing the daily struggle.

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  • Posted

    Hi, sorry that you're part of our club. We have a very similar story, left should blade, breast shingles, TINY rash, almost invisible, but months of pain. I had shingles in October 2016.I take gab, also use Aspercreme pain cream with Lidocaine, Extra Strength Tylenol 3 times a day (both of those were 4 times at day at my worst), I was at 2700 MG of Gab, which is a very high dose, and a prescription anti-inflmmatory I'd been on for years. There's some research showing that anti-inflammatories work well with Gab and enhance its benefit. I'm now down to 1000 mg of gab.

    I found that if I avoided certain actions like bending, reaching, twisting and lifting, I could avoid some of the pain. Yes, it's limiting, but I still do some of this carefully, but cleaning the bottom shelf of the fridge-no way, searching through the freezer, nope; lifting more than 6 pounds, forget it. Anything I can do to prevent the nerves from firing I believe will help me heal.

    It took over a year for the fatigue to decrease, but it has as has the pain. I started to see improvement at about 3 months (MINIMAL improvement, measured in tiny steps, but it was improvement) and take two steps forward and one back, but we DO improve. We just can't predict how long it will take. However, as hard as it is to accept, less stress and activity that increases pain will help. I had to quit my job because of the pain and my Gab Brain. I now pace myself more, but also have a lot more energy. Four months after my shingles out break, I could hardly walk a block (when I got it, I was hiking in National Parks in Utah). Eventually I increased my strength and stamina. I also stopped crying every day? I bet that happens to you also, right? This condition can be devastating and many of us have emotional reactions, either from the virus or the meds.

    You mention leg weakness, are you on gabapentin/Neurontin? It can cause numb, weak feelings in the legs.  Don't let this get you down any more than it has, but realize this is a major illness, and will take adjusting too. We have an invisible condition that few people understand.

     

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  • Posted

    Niki I SWEAR, I posted my reply before I saw your response to frank regarding "invisible illness". I guess we have more than shingles in the same are in common! If you were to draw a line around your body, does it generally follow the "bra band" line? I can't remember which nerve it is, but that's a common area. BTW, you may want to not bother with wearing a bra, it took me months to figure that out. It's demoralizing, but it helped decrease the pain. I had to buy new clothes to make me feel a bit more modest and comfortable. Ah yes, the new world of PHN.

    I've said, the next person who tells me, but you look terrific, gets punched! Believe me, inside this "gorgeous" exterior is the body of a 110 year old, tired, confused woman in a lot of pain.  BUT, that was in the past year. Now I'm still "gorgeous", but the pain and fatigue are much less. Also, that pain can show up in many areas, not just the left back/breast.

    Frank, you said yours was "torso", do you mean near your waist? If it's low enough that sometimes does travel down the nerve to the foot. A friend had that nerve affected. I hope Niki's is higher.

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    • Posted

      Hi Babs

      My rash was on my back below my bra line, left side but the pain is further down at the bottom of my rib cage. So I'm assuming it's that same nerve as your friend.

      I'm on no medication at all, my doctor just told me that it sounded like PHN. Unfortunately my life is extremely stressful due to personal reasons so I'm assuming that doesn't help!! I found the muscle weakness tends to happen when I'm walking up stairs, which doesn't help seeing as my house is at the top of about thirty steps, and also walking up hill. I agree though that bending down is a problem. It's not so bad getting down but getting up is very painful!! Maybe I should speak to my doctor about medication although I am on tablets already for depression and anxiety. Thank you for your advise, it is really helpful.

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  • Posted

    The major pain is from my diaphragm to waist front and back left side and then I have this one pinching/stabbing pain that runs up my side almost to my arm pit. Believe it or not I find that I sleep somewhat better if I lay on my left side on the stabbing pain, go figure. 

    Something that is rarely mentioned is swelling, from the beginning I have had swelling in some of the pain areas, is this common?

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    • Posted

      I'm in a different PHN group and people there have had swelling. I never have, but have had the sensation of swelling for very short times in my lymph node areas under my arm. That may sound, but I can tell there's no physical swelling, but if feels like there is.

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  • Posted

    Sorry you are uncomfortable, Niki.  I am 47 and got a severe case of Shingles one year ago.  My pain is debilitating and requires plenty of meds, including daily opioids.  I am on disability but will be returning full-time or I will lose my job.  Expect the pain to lessen overtime.  However, I don't know if it will ever go away.  Exhaustion is common.  If your pain continues, get a neurologist to help. I have seen SO many doctors and pain specialist, but the neurologist was the ONLY doctor that can see the entire picture.  It took me four months to get an appointment so don't wait too long to get started.  Best of luck.  

     

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