New to site..questions regarding pain..

[jbix]

Hello! I was diagnosed a little over a year ago with RRMS and have since had 2 relapses while waiting to get on Tysabri. The crawling, itchy feeling at night has been a problem, but it has now gone into pain. Right leg pain has been a problem for awhile during the day, but now it seems like my skin hurts all the time....general achiness...almost like I got a bad sunburn. Does anyone else experience this feeling, or should I look into non-MS causes?

[Royjr]

Hello jbix, I don't personally have that issue but I know a few of my fellow MSer that experience that issue. I don't know if steroids help that problem but it's worth looking into since that seem to be an inflammation problem. Good luck.

[jimeka]

I don't know if this will help, but I occasionally get a burning sensation in my left forearm that progresses to pain, then it finishes up in my fingers. I take OxyContin and pregablin which takes the edge off of it. It feels like a candle gently glowing under the skin. I have only experienced the itching when I had an allergic reaction to a drug the neurologist gave me. I was treated for headlice, scabies, you name it before they would accept it was an allergy to the tablets. I have never had headlice in my life but my head would itch all the time, and the itch worked downwards, it had got to my calves before they took any notice, then they panicked I had been on the drug 4 months, so I would check your medication. Let us know how you get on, Cheers Jimeka

[Sukie427 in reply to jimeka]

Hi, Jimeka. Don't be embarrassed about being mistakenly dx'ed with headlice; only people with really clean hair get headlice! I found that out when there was an outbreak at my son's school many years ago and my son came home with it......!

[jbix in reply to jimeka]

I, too, had the bug crawling sensation. Once the thought enters one's head that there might be bugs crawling, it's hard to get the image to go away! Apparently, it's a fairly common sensation, however when it first happens to you, it's scary!

[Miriade]

Hi jibix. I don't have exactly the same, but my skin is extreme sensitive and itch. I use aloe vera gel all over skin and hemp oil all over skin. Both help hydratation and calming reactions. Related to pain, I use a huge magnetic belt in my waist with power neodymium magnets. When all my spine hurts, in short time aliviate all inflammation. I also use in my shoes special magnetic pads. Our body is made by positive and negative ions. And magnetic therapy sure helps to stavilize our energy. I do not take opioids or steroids. I am against them. Try to use more natural imgredients. I also use glucosamin, condroitin and MSM. All of them helps inflamation, plus curcumin95. I have a lot of damage in my cervical and thoracic. When I went to physiotheray, the doctor got surprise how I dont have symptoms of my huge degenerative bones. I dont. I use another magnetic collar in my neck if I have stiff muscle.

[jbix in reply to Miriade]

Thank you. I have had really bad reactions to steroids and figure that I'm already on a bunch of medication. Narcotics scare me since they are so addictive!

[agapepilgrim in reply to Miriade]

Where do you buy them??!

[agapepilgrim in reply to Miriade]

@Mirade where do you buy them?

[Miriade in reply to agapepilgrim]

I went online at Ovestock and Amazon. I suggest you read a little before for dont buy wrong product. A lot of excessive or not efficient products in market. I need to look in my files where I order them. I know the shoes pads with magnets I received from China post office. I will post to you later

[cloudbear]

dont know where you are at but check into medical cannabis

[6092177588 in reply to cloudbear]

Expensive but so is cbd. Thanks

[CherieMSCN]

jbix , Like you, I try to find non-medicinal ways to manage pain. I have a patch on the outside of my lower leg that started feeling like a deep abrasion or bad sunburn about 6 months ago and within a month, I was in a full blown relapse with that being the only new symptom in the complex of symptoms that worsened. I do find that Aloe helps a little, not much. An ice pack or localized heat can also calm the area. When it's really bad, meditation helps. I rarely notice it much when I am really busy or my mind is engaged in a task but it is worst at night when I am trying to fall asleep.

[jbix in reply to CherieMSCN]

Thanks! I'm afraid that I'm heading into a relapse. Little issues go up and down with the days and with my level of stress and fatigue. This new problem seems to be more constant and nagging. I have my yearly MRI and check in with my neurologist at the end of the month, so I will be able to run these things by her.

[CalfeeChick CommunityAmbassador in reply to jbix]

Best wishes to you and praying you receive some relief. Lynn

[Karen-x]

I occasionally get a patch of skins that hurt to the touch, like when cloths rub against it, but its not a deep pain. More nagging. When it first started ( before I was diagnosed) I thought for sure I was getting shingles. But I don't treat these patches and they clear up within a week or two.

[CalfeeChick CommunityAmbassador]

I am new to site and was just diagnosed Aug. 3. I have numbness and tingling from rib cage down. I tried Lucerin Calming cream and it helps a little. So far doctor has given me 2 courses of steroids while they were still looking for causes. Steroids helped reduce the intensity of of the tingling. I wish I could find something for my feet, which feel like they've got steel rods from the arch to the toes. BTW, I start Tysabri next month, am a little nervous, but need some relief. Best to you, Lynn

#CalfeeChick

[Sukie427 in reply to CalfeeChick]

Hi, #CalfeeChick! Look into medical cannabis if you live in a state that has it. You don't have to smoke it; I have found that a cream works best. If you don't, try hemp (CBD) oil, legal in all states and available on-line.

[CalfeeChick CommunityAmbassador in reply to Sukie427]

Someone recommended the cream, have a friend looking into it for me to use on my feet. Hope it works.

[Sukie427 in reply to CalfeeChick]

Good luck!

[jbix in reply to CalfeeChick]

Did you find out about the cream? I'm confused as to what to buy.

[CalfeeChick CommunityAmbassador in reply to jbix]

Not yet, A friend recommended it. His wife has a license and uses it for the arthritis in her hands. It's called emu cream, not sure if that's the correct spelling.

[Miriade in reply to Sukie427]

Hi Sukie427. I buy hemp oil from Nutiva brand, made in Canada. I order by Amazon, and I guess is helping me because I use everyday.

[Sukie427 in reply to Miriade]

Excellent. I am glad it helps. Prior to moving a year ago, I lived in a state that did not have legal marijuana, and I had gotten Charlotte's Web for migraines. It worked if I caught it immediately, but didn't last. When I moved to AZ, I tried a tincture of CBD oil with a small infusion of THC, and it works a lot better; doesn't get me stoned and stupid, just stops the pain and relaxes me. Now, both my husband and I try to take the CBD oil without the THC infusion as a dietary supplement on a regular basis and it does seem to help.

[jbix in reply to CalfeeChick]

Best wishes for you on Tysabri. Like MS, we all seem to have different reactions to the different treatments available. I was absolutely miserable on Avonex and have found Tysabri to be much more tolerable. It's obviously not convenient to schedule infusions into one's busy schedule, but my reaction is so much better.

[CalfeeChick CommunityAmbassador in reply to jbix]

With my first infusion soon, I am anxious, but wanting to be aggressive in my treatment. Would you mind detailing what you felt and how it was for your first few treatments. How long before your body felt some relief from symptoms? Lynn

#jbix

#CalfeeChick

[Sukie427 in reply to CalfeeChick]

I know a lot of people on Tysabri and they swear by it. My doctor was thinking about using it because of its success rate, but first he had me tested to see if I was positive for the John Collins Virus (JC Virus). It's a simple blood test. One of the potential side effects of Tysabri is PML, a brain infection that is often fatal, and if it isn't, the patient wishes it was. PML seems to be more prevalent among Tysabri patients positive for the JC virus, which I was. Therefore, my dr would not put me on Tysabri. Many people have the JC Virus but it doesn't generally affect them except in rare cases such as this. Some of the people I know on Tysabri are JCV positive--their drs just watch them more closely and some of them have been on it for many years with no consequence. Now I am on Tecfidera which has also caused about 4 cases of PML. I refused to let my neuro tell me the symptoms of PML nor did I research it as I don't want to psychologically start "experiencing" them. I would just notify him of anything strange or very unusual starting to happen, but so far nothing has. I don't want to scare you and am sure that Tysabri will be very helpful to you, but I just wanted you to have this information (if you don't already) so you go in with full knowledge. Best of luck! Keep us posted on how it goes.

[CalfeeChick CommunityAmbassador in reply to Sukie427]

I also have the JCV antibodies, so have been exposed somewhere along my life path. never had the virus. So I will start with the Tsyabri and hope research comes up with something new before my 24 month time limit comes up.

[Sukie427 in reply to CalfeeChick]

Wishing you the best. I am sure it will help you.

[jbix in reply to Sukie427]

My neurologist quotes the actual % rates for PML. They are ridiculously small for JC negative and still small for JC positive patients. The neuro that first made the diagnosis painted a much grimmer picture, but my neurologist now treats nothing but MS. She's up on all the research.

[CalfeeChick CommunityAmbassador in reply to jbix]

My odds are 1/1000.

[Sukie427 in reply to jbix]

My neuro is also an MS specialist. He quoted my odds of getting PML with Tecfidera as 1/30,000. Of course, the drug is fairly new so who knows if those odds will change? I am probably unrealistically scared of PML, but the possibility of getting it scares me to death. I am hoping that they develop a drug that doesn't have this as a side effect.

[jbix in reply to Sukie427]

I wanted to come back and reply to your comment - even though it was 2 months, ago! I was thinking things through, and I hope that I didn't come across as dismissing your concern over PML. I totally didn't mean to come off that way! It is a crazy, scary illness, and I don't blame you for being scared of it. I don't know if I will feel differently if my status changes. Right now, the difference between taking Avonex and Tysabri are night and day as far as side effects. I was so miserable on Avonex I doubt if I cared about anything more than feeling better than that!

[CalfeeChick CommunityAmbassador in reply to Sukie427]

They send me the "prescribing info" every time I talk with them and give me the warnings. Right now we feel the benefit is worth the risk. Keep in touch. Lyn

[Sukie427 in reply to CalfeeChick]

Do let us know how you do on it, Lyn. I am sure it will be fine. I do know a lot of patients on Tysabri, and some are JCV positive as well. One of these JCV positive people has been on Tysabri for years with no problems. In fact, she was switched to a new med which didn't work as well so she went back to Tysabri!

[jbix in reply to CalfeeChick]

I'm not sure the Tysabri helped with symptoms as much as it kept things from getting worse. The first few infusions were rough for me because they give you an antihistamine and steroids to ward off any potential allergic reaction. I respond quite poorly to steroids and have an intense reaction to Benedryl. I was completely out of it. Now that I'm past the first three doses, I really don't notice any side effects.

[Sukie427]

I too have generalized pain all over my body, along with fatigue. If anyone asked me where it actually hurt, I could not tell them because it just hurts all over. I don't have the burning sensation, though, but I think it's all symptomatic. I am sorry to say that the only thing that I have found which actually helps it is medical cannabis. If you live in a state where that is legal, ask your neuro about it. I use a cream which I just rub on over a vein and relief starts in about 10-15 minutes. If you don't live in a state with legal medical marijuana, you might want to try CBD oil, which is legal in all states and can be gotten on the Internet. There are many purveyors of CBD oil, but I have found the most effective to be Charlotte's Web. Good luck!

[Satinshaw]

I have the same problem! The burning sensation in my back and down my left leg are crazy ! These days everything that occurs I just automatically blame on MS ! Hang in there , when I have the burning sensation I just shut my eyes and picture myself at the beach catching some rays , and enjoying the ocean

[Daring_Greatly]

Hi @jbix,

I just posted something very similiar and found this post. I'm wondering if you have found anything that helps with the symptoms you mentioned?

Carrie